I am an endo sufferer (a woman who has endometriosis). My mother was an endo sufferer. My mother continues to experience the repercussions of her treatment and I still remember her being bed bound or in hospital for much of my youth. The ‘end’ for my mother came, not from a cure, or a treatment that dealt with the causes of endometriosis, but a violent and arguably archaic extraction of her reproductive organs and parts of her intestines as the endometrial tissue had spread.
The experiences of myself, my mother and countless other women illustrate society’s understanding and treatment of the female body. It represents the ways in which we have been silenced and self-silence our experiences out of shame, propriety, and expectations. Expectations that a woman – who is equal to man – must operate in exactly the same way as man, irrespective of this gender specific disease. Who, by virtue of this expectation, will subordinate their pain in line with socially constructed taboos and shame associated with the female reproductive system.
Yet, this is not a disease that impacts a minority of individuals. Endometriosis impacts 176 million women worldwide, its cause and cure remains unknown and it continues to be under-researched. Diagnosis can take between 7 to 10 years as symptoms are often written off as ‘bad periods’. When it is diagnosed, it is identified as a chronic illness but awareness of the disease remains minimal. Why is endometriosis so invisible? Why is the health of 2% of the world’s population and 4.6% of the female population ignored? Why does it only become identified and addressed when it becomes an issue for fertility?
This invisibility, silencing and ignorance occurs on multiple levels – systemic, societal and individual – and is undertaken by sufferer and non-sufferer alike, male and female. At the heart of this is the female body; the way it is seen, heard and treated. It is the politics of the body that I will address here, exploring the socio-political structures that marginalise the female experience and her body. I will highlight how endometriosis sufferers are marginalised by virtue of a (1) biopolitics driven, (2) patriarchal, heteronormative and (3) racialized society. Awareness and action are only possible if changes are made to our understanding of the female body and its position within society.
Why is the female body marginalised? Understanding the wider context
Understanding the position and treatment of the female body begins with a wider comprehension of the structures that impact it. By this I mean the socio-political underpinnings of society – i.e. political systems, ideologies, norms and values ad supporting economic and social systems. Within the political arena we have seen a shift in the referent object of politics, moving away from serving the sovereign (politics of sovereignty) to serving the citizen (politics of society). If we ask ‘who is citizen?’ we begin to uncover the marginalisation of the female body, as the political (though dominated and drive by the individual and their rights and freedoms) generalises its populace and it does so by equating the populace to the male body. Take Hobbes’ body politic as an example – comprised of ‘natural man’, the body of the state is reflective of the body of the citizen (i.e. man) – and expounded further by theorists such as Ashley and their equation of ‘statecraft as mancraft’ or Peterson’s claim of gendered states. By virtue of reifying the individual, individuality is lost in favour of the universality. While the idea that everyone is equal is a value that we hold dear, equality without equitability leads to the marginalisation of the minority in favour of the majority and it is here – within the structural systems – that we see the wider positioning of the universal male body (the referent object) within the political and the marginalisation of the female body.
Biopolitics, the State and Endometriosis
According to Foucault, these socio-political structures that regulate the actions of the body are a reflection of the state’s biopower – its ability to ‘make live and letting die’. Health becomes an aspect of biopolitics (the regulation of life and death by the state) by virtue of its concern for procreation, birth, mortality, level of health and life expectancy. Yet, it does not account for chronic illness such as endometriosis and the associated experience of pain. What instigates limited response is its impact upon fertility, highlighting the limited (and economically driven) focus of the state (e.g. birth rates and productivity) upon the female body. Fundamentally, it reveals the objectification and reduction the female body to ‘mother’. Foucault’s biopolitics highlights the knowledge and power structures that ‘favour’ some diseases, such as cancer, over others, such as endometriosis, by virtue of their indiscriminate nature. It reasserts hierarchical structures that marginalises the health of women by virtue of its limited impact upon the state. For endometriosis to be considered worthy of response, we must shift the socio-political structures founded upon biopolitics to a politics that considers the standard and experience of living.
Gender: The Marginalisation of Women’s Bodies
Whilst there has been increasing progress in gender equality within society, the general omission of several aspects of the female experience, such as periods and reproductive health continue to marginalise women’s bodies. They present structural hurdles within society that undermine awareness of endometriosis and its treatment. If we turn to the seminal work of Simone de Beauvoir, The Second Sex, we see woman identified as ‘other’ and more crucially as ‘object’. This distinction from the agency of man emphasises the systemic subordination and marginalisation of woman’s body. Where it fails to serve the purpose of procreation – that woman-as-object is supposed to fulfil – she is considered defective or incomplete. What is interesting is the lack of desire to overcome this basic function of the female body. Societal norms identify woman-as-object/woman-as-mother lead to women themselves also identifying themselves in terms of defectiveness. This entrenches the notion of ‘otherness’ upon the female body. The lack of research on endometriosis raises questions regarding the (f)utility of fixing defective female bodies and the value placed upon them. If the patriarchal society continues to identify women as objects and subordinate them in relation to the power and agency of man, then this disparity will continue.
Race: The Marginalisation of Asian Women’s Bodies
Differentiation of the female body reveals the racialized impact of endometriosis. Medical research has found that the disease is prevalent in Asian women and least prevalent in black women. Each of these facts reveals a racial dynamic to the treatment of the disease. In the first instance, questions may be posed over a possible correlation between the lack of research and cure, and the race of the predominant sufferers. Does the fact that Asian women disproportionately suffer from endometriosis, in comparison to white women, mean that their bodies are less valued?
In the second instance, questions may be posed with regards to racial bias against black women as a cause of under-reporting and lack of diagnoses. Zoanne Clack, in an article in National Geographic (January 2020), conveyed the undermining of women of colour’s experience of pain. The assertion that endometriosis is less prevalent in black women could more accurately be interpreted as less black women are diagnosed with endometriosis as their experience of pain is questioned or dismissed. Further, with scientific research establishing endometriosis to be less prevalent in black women, there will be a reticence to recognise symptoms in black women due to the established demographics. Central to these points is the social construction of pain and its sufferers. Noting the racialized nature of society and medical science subordination of the experience of pain of Asian and black women further inhibits our understanding of the disease and its possible solution.
Bringing the female body to the fore allows us to comprehend the multiple levels of marginalisation and subordination that occurs. The structural and systemic ignorance of a chronic illness that affects 2% of the world’s population on the basis that it fails to impact the constructed universal man, damns the health and everyday experience of women. Fundamentally, we see a society unwilling to engage with biological realities of womanhood and the racial biases that exist. We see a society that cherishes the individual as long as it contributes to the biopower of the state and can be addressed and treated on mass. The marginalisation of endometriosis is rooted in the subordination of women’s bodies, of their experiences and health in a biopolitical, patriarchal, heteronormative and racialized society. Awareness, research, and cure will only be achieved if we re-orientate the socio-political structures of society and elevate women to be seen, heard and believed.
Sameera Khalfey is an international relations theorist at the University of Birmingham.
Image Credit: Fuschia Foot