Nikita Aashi Chadha
Representations of endometriosis within the media, society and even decision-making rooms within Parliament, unsettles me as a working class, Indian, yet British born individual. Anyone who represents a marginalised community or experience can understand and relate. Our stories, faces and presence are missing from mainstream societal narratives. We are not fairly represented across places or positions of power – making it even harder to offer our counter narrative, or to be seen on a wider structural level. The stories that we are told are one sided and are generally white, cisgender accounts of dealing with this disease. This approach to representing endometriosis does an active disservice to every sufferer of this condition that is not white or cisgender.
For those who are marginalised – who are brown, black, and/or transgender – an intersectional approach is the only method to fairly represent the diverse cross-section of individuals who suffer with endometriosis. Cysters, and I personally, recognise that you do not have to identify as female to suffer with endometriosis and I will be referring to sufferers as individuals (rather than women) throughout this piece.
When the BBC spotlighted endometriosis, they only included one non-white individual (who identifies as female) within the various thought pieces and articles written on the topic. Marginalised stories are never shared in the same way as our white counterparts, or with the same vigour. I can’t recall a mainstream representation of how endometriosis affects the transgender community either. This type of behaviour implies that we are not worthy of being seen as true representatives of this condition. Not only is this exclusionary, it is damaging to the collective psyche of marginalised experience as “rarely are the intersections for people with endometriosis acknowledged”.
The notable influencers, or people that are profiting directly (personally and financially) from speaking about endometriosis, who are securing grant funding from organisations or being invited to speak at prominent events tend to all be white and cis. In contrast, marginalised individuals, communities and organisations are generally left to fend for themselves, included as an afterthought, or to highlight how ‘diverse’ that group or meeting is. We are just as likely to be affected by this disease, and we are tired of being excluded. Tired of being seen as the ‘fringe’ narrative or diversity quota regarding a condition that affects our everyday waking lives.
Intersectionality as a concept was coined in 1989 by Professor Kimberlé Crenshaw to describe how different parts of identity overlap and interact with each other, resulting in either shifting positions of disadvantage or privilege – or maybe both dependent on your circumstances. These can include but are not limited to race, class, gender and religion. Historically, on a global scale there has been a succinct social and racial hierarchy at play as a result of colonisation and imperialism. Whiteness has been equated to humanity and anything outside of its boundaries is seen as other, or inhuman. If you are someone, who like me – is at an intersection of class, gender, race and indeed otherness – intersectionality is the only movement or theory that accommodates and understands our experiences.
This approach has been around for 31 years and there is still an unwillingness to apply it from the top-down, with whiteness and femininity still very much controlling the discourse around endometriosis. What happens to those who do not identify, or are not seen to belong to either of those groups? Well, generally speaking – discrimination, misdiagnosis, lack of healthcare or access to services. It seems as if many medical professionals do not attribute this condition to anyone outside of the ‘norm’ and they continue to perpetuate social biases.
Can we ever hope to inspire individuals to change, when society and media continue to perpetuate the same narratives? When we allow everyday human experiences only to be conveyed through one lens?
The NHS has been audited several times in the last four years and the results concerning people of colour and the transgender community highlight exactly what I mean (see results for 2008 and 2018). Asian people specifically, are seen to “express lower levels of satisfaction and less positive experiences than other ethnic groups” which is surprising, given that Asian people represent the highest diasporic movement into this country – and are often labelled as the ‘model minority’. If we feel this way, what must that mean for other ethnicities? The NHS also reported that, concerning transgender patients, their systems “lack rigidity”, their doctors “lack understanding and empathy”. NHS services tend to apply a “one size fits all approach” which ignores “individual needs or choices”.
The need for intersectionality is pressing within our current healthcare system, and there has already been research detailing what this approach could look like in reality. In 2018, Wilson and colleagues devised an intersectional conceptual framework they believed should be implemented into clinical medical practice in the US. It worked on the premise of “thinking about patients’ multiple identities” and how recognition of these identities could be used for treatment purposes, as well as “aiding physicians in accurately diagnosing their patients” (see also).
The framework could “address systematic issues of symptom minimization and diagnostic overshadowing” for patients who face “discrimination, marginalisation or disparities in the healthcare system”, working two-fold as it also incorporates the physician’s response to their patients’ identities. Wilson and colleagues advocated that “institutions should fund research on the underlying causes of misdiagnosis in various, intersectional populations” and compare it to diagnosing and treating the condition within different populations. She has provided a framework, and next steps and I agree with her outlook on the approach. There has been enough talk, research and discussion on marginalised experiences within the UK to highlight an obvious disparity… but nothing is actually being done to rectify it.
Countless charities, organisations and even the government itself, claim to be ‘inclusive’ and ‘diverse’ but how many marginalised individuals or organisations actually hold any real position of power that enables them to create change?
It seems that even now, in the 21st century, we are still clinging to our murky colonial past. But how can we bring about or start to influence change? Education. Of our communities, for our communities and for society as a whole – education and real time representation will help to subvert the conventional narratives around whiteness and femininity when it comes to endometriosis. We need to be fairly represented, within the media so that our stories are seen, understood and celebrated as the others are.
Representation must be followed by access to decision-making rooms so that true diversity of thought and experience can be included from the very start. We are not an after-thought, or a way of accessing funding by working with the ‘hardest to reach parts of society’. I’ve attended working groups on endometriosis and access, that should be overflowing with both ethnic minority and transgender representation – but they are very much still white and cis. It is not enough to have minimal representation (one or two people), for already unrepresented and marginalised groups.
There needs to be an atmosphere of co-production and co-design in these spaces particularly, as you can’t hope to find a solution to a set of problems you’ve never experienced yourself. It is called a lived experience for that very reason and we don’t need others to speak or make decisions on our behalf. You should be actively inviting us to the table to participate, make decisions, and spotlight our voices. If you’re an organisation or donor in this space, you can actively fund our projects, working alongside our communities to bring around social change.
Endometriosis UK has approached Cysters for a culturally inclusive project on Endometriosis, and that’s a great start. Intersectionality as an approach should be applied within all our systems, whether that be judiciary, education or healthcare. The United Kingdom in 2020 is an epicentre of multiculturalism; of various identities, races, and genders. Endometriosis sufferers are not a monolith, and to suggest so is to continue where the past left off – to erase the lives and struggles of those who are different and outside of the status quo. Everyday people like you and me.
Nikita Aashi Chadha is a Writer, Advocate and Speaker for Cysters* Cysters is a grassroots charity, dedicated to supporting & improving the health, education & welfare of those living with reproductive & mental health issues from various marginalised or cultural backgrounds. We aim to educate the public about reproductive health, educate the community so that they can make informed choices around their treatment options & challenge the cultural misogyny behind reproductive health. If you’re interested in contributing to our work – writing a viewpoint piece, lending your expertise, funding our projects; please get in touch smile@cysters.org
Image Credit: Cysters