Here at Get Well Soon there’s a couple of things that we’re trying to do. One of them that is very important to us is creating a validating and cathartic community. Somewhere to celebrate the art that we’re making out of our experiences, but also to acknowledge the hardships and frustrations that come with chronic illness, pain and disability; and to be fortified as a community by the sharing of these experiences. This is why inclusivity and intersectionality are incredibly important to us, which is why you won’t hear us referring to conditions like endometriosis and chronic pelvic pain in gendered terms. For trans, non binary, gender diverse and intersex people, constantly seeing your own experiences discussed in literature with terms that don’t match, deny and erase your existence is incredibly taxing. Talking in terms of spoon theory; if reading a scientific article or news article about your condition costs one or two spoons, reading about it in invalidating terms costs three, or ten, or all of them. At its core inclusivity and intersectionality are about justice and compassion, and we believe everyone should be able to get on board with justice and compassion.
Beyond this, we are also passionate about working in a critical thinking and evidence based framework; which can be extra challenging when the people that built that framework are your oppressors. Science and medicine are rife with artefacts of the white supremacist patriarchy; reinforcing biases or simply ignoring the existence of people who are not biotypical, able-bodied, cis, het, white men. But that doesn’t mean we throw out the baby with the bathwater. The principles of science, evidence and critical thinking are good, it’s simply the case that we need to continue to apply those principles to the information we have, including that information which comes from science and medicine. What all of this really means is that we’re still taking a scientific and evidence based approach to the information we’re presenting and discussing here (where applicable), but that sometimes that means criticising specific examples of medicine and science (something which I am sure is entirely relatable and familiar to most of our audience).
The point I am getting to on this is all encompassing about our research and our approach, but it is also specific to the above points about inclusivity and intersectionality. We have good evidence that sex and gender are not the same things (read more about that here; this will be a hyperlink when I publish the corresponding blog post), that they are both constructs (although in different ways—read more about that here; this will also be a hyperlink when the relevant blog post is ready) and that neither are binary. We also have good evidence behind acknowledging the existence of misogyny in medicine, racism in medicine, cissexism, intersex erasure, homophobia and queerphobia in medicine, fatphobia in medicine, as well as, of course, ableism within medicine; and acknowledging that these things interact and intersect in ways that disproportionately affect some people more than others.
Because one of our members (me, Evie, the one writing this) is a non binary person with endometriosis, it does mean that there will be content on this website written about those things and how they intersect. We also realise that not everyone has a friendly neighbourhood enby with a science communications degree to explain terminology that is inclusive across genders (like “enby” which is a colloquial term based on the english pronunciation of the letters N and B for Non Binary, and is used grammatically the same way you would use man, woman, girl or boy), so we’ve put together some resources to make that language more accessible, and hope that in doing so more people will put effort into using this language when discussing things that really don’t actually need to be gendered. There is a blog post of glossary terms (almost ready) here (mostly looking at the terms that are relevant to the scope of our discussions); and a more in-depth trans language primer here. We are also working towards being able to embed quick definitions and explanations of terms that people might not be familiar with in the text, so that you don’t need to click away to check a term you haven’t come across before (if you’re reading this and you know how to make Wix do this thing, please let me know).
Part of the reason that this language is really good is not just that it makes trans, gender diverse and intersex people feel welcomed and comfortable, but on the whole, the best principle around using ungendered language is actually just to be very accurate and precise. We can say things like “people who menstruate” and “people with uteruses” or “people with oestrogen dominant hormone systems” and it makes it very clear exactly who we’re talking about (even if it makes JK Rowling have a big sad).
The same is also important when we’re talking about other intersections; when we talk about how race affects medical treatment, we know that People of Colour are less likely to receive the same level of care as white people, but more so than that we know that specifically Black people, and even more specifically Black women and AFAB people are most at risk of receiving inadequate or negligent healthcare, compared to white people and non-Black POC. It’s important to make that distinction between how racism affects People of Colour as a whole, versus how it affects Black people, because that’s the most accurate way to represent the information and because without acknowledging these things, how can we ever hope to see change?
Because we acknowledge the way that inaccurate and exclusionary language can harm marginalised people, we have made the decision that we will edit or paraphrase language that is otherwise cissexist, racist, or exclusionary, and make a note of it when we do. We don’t want to misrepresent what articles or research is saying, or imply that people with intersecting marginalisation have been included in the research or conversation when they haven’t, so we’ll make sure that you know we changed that language, and if we are directly quoting or linking to external media that doesn’t follow the same guidelines we’re using, we will give you content warnings about that.
We really hope that you can see that the reasoning behind all of this is compassion and evidence—being accurate because accuracy is good, but also because it is accurate to acknowledge the vast spectrum that is human variation and human experiences. We want to be able to do this in a way that makes being an ally to people with different intersections to you as accessible as possible, and we hope it makes everyone feel seen, validated and welcome.