A couple of months ago I went to a demonstration for the first time since the pandemic started. This demo (by transzorgnu) was organised as the start of a movement to fight against the state of transgender healthcare in the Netherlands. Throughout the many speeches and social media content surrounding the demonstration, I was constantly struck by the many parallels that could be drawn between the issues that trans communities and chronic illness communities often face in searching for healthcare. I suppose it shouldn’t be such a surprise because a lot of the problems come from insufficient healthcare. I feel there are some connections to be made between the intersecting systems of ableism and transphobia that were not mentioned at the demonstration. So in this post I have tried to explore some of the thoughts that came to me during the demo.
The demands
For those less involved in trans movements and communities, I will take a moment to sketch out some of the problems with trans healthcare in the Netherlands. Although not legally the case, in practise there is a monopoly on trans specific healthcare (gender treatment), with two of the big hospitals in Amsterdam (merged under the name A-UMC) basically deciding on the way in which gender treatment is carried out. At a basic level this means incredibly long waiting lists for even the first appointment at the gender clinic (the average wait time is two years, and then another year for diagnostic processes). But this also means that the mistreatment that occurs at the Vu gender clinic, is then taken as the method of dealing with trans healthcare.
So what exactly is this mistreatment? Well, to summarise, it consists of jumping through many humiliating hoops, invasive questioning, often over things totally unrelated to gender such as “are you a prostitute?”. There are invasive and outdated diagnostic procedures, and all of this is done so that one, cis (people who identify as the gender they were assigned at birth) person (the clinic refuses to hire non-binary or trans people) can decide if you have the right motivation to undergo gender treatment. So there is very little choice but to go along with everything if you want access to the care they provide. Many of the stories of the mistreatment in the last 20 years can be found on the @vugendermistreatment instagram account, where people can send in their own experiences (sadly, these seem only to be in Dutch, but the number of suicide trigger warnings on the page tells a story, even if you cannot understand the text).
So the organisers of the demo (Transzorgnu) created a set of demands to the Vu Medisch Centrum:
1. No waiting lists.
2. No diagnosis; complete self-determination.
3. Decentralise trans care, break the monopoly. Make fast, safe, and local transition care available, a.o. through hormone treatment available at GP’s.
4. Transgender care in transgender hands. Give trans people the tools they need to become transition care providers.
A more detailed list of demands, and a more thorough explanation of them can be found at the VU Gender mistreatment website who have their own set of demands.
Throughout the demo, other demands were also voiced, such as the need for bodily autonomy in decisions about trans healthcare, insurance companies not getting to decide what is considered insurable healthcare, and a basic level of respect given to trans patients.
Chronic illness treatment
What struck me about this is that a lot of the demands and experiences that were spoken about are incredibly similar to the experiences of many in chronic illness communities.
Long waiting lists are the norm for many with chronic illnesses: in the Netherlands, to my knowledge the waiting list for the one and only Ehlers Danlos specialist is two years, to the chronic fatigue syndrome and POTS specialist I want to go to, at least a year, and those are just the ones I know about. In the UK, these waiting times are even longer, sometimes people wait two or three years to see specialists about things that are incredibly severe. Care is anything but timely – and it needs to be.
On the note of specialists – many trans organisers argue that a lot of transcare is not even all that specialist, and can easily be carried out by GPs. For instance the prescribing of certain hormones etc. And yet the current practice is that people seeking gender treatment are referred on to specialists, which seems like a waste of time and energy for all involved!
The next demand, ‘no diagnosis’, is not quite the same with chronic illnesses. In trans discourse, requiring a diagnosis of gender dysphoria to access gender treatment is fundamentally misunderstanding gender, but also gatekeeping access to treatment. But there are still similarities here: chronic illness diagnoses are very difficult to get, but incredibly necessary for accessing treatments and healthcare benefits, health insurance support, etc. And yet they are rarely given out. It took me four or five years of living with CFS/ME, and knowing exactly what it is, for somebody to give me an official diagnosis of it. And that’s longer for other illnesses. So using diagnosis as a way of gatekeeping treatment is definitely a similar issue.
Sadly this generally comes down to the fact that healthcare is run following a business model, and therefore costs need to be kept down as much as possible, so testing and care is kept as cheap as possible, and transitioning is not encouraged. By only giving care to people with a diagnosis you can also ensure that they “really” need the help and you waste no expenses on people who don’t, but sadly it means that people without a diagnosis miss out on crucial care.
I could go through each demand, but what it all comes down to is a need for bodily autonomy, help that is timely, access to treatment, financial support from health insurance (which, in the Netherlands, seems not to cover a fair amount of medical procedures) and respect and trust from medical professionals. Sadly this is often lacking in both trans and chronic illness healthcare.
An unreliable voice
But what these similarities in care (or lack of) really speak to, is the position that the trans or chronically ill/disabled person takes in healthcare. The lack of voice, or the powerlessness of their voice, and the lack of trust placed in their experience.
What do I mean by this? It is overwhelmingly the case in trans and chronically ill people’s experiences that they have to spend endless time and energy on having to prove that they are sick – or trans – enough to need help. Explaining their experience is not enough. Instead, there needs to be ample proof that they are not making it up, faking it, or over-exaggerating their experience. The idea that trans people are faking for attention, and that chronically ill people are faking for attention are both pervasive ideas that seem to inform the way they are treated. So, instead of trusting the voice of trans and chronically ill people, their experiences are doubted until a medical professional deems them to be true. Guilty until proven innocent. And more often than not, this validation takes years, or is never given. In short, chronically ill and trans voices are not seen as reliable narrators of their own lives.
The distrust place in these voices is deeply rooted in both ableism and transphobia. Disabled people and chronically ill people’s voices have been, historically, and continue to be, seen as less rational. The idea that disabled people are less intelligent is, if not intentionally, all around us – as you can quite clearly tell by spending just one day in a wheelchair and seeing how people speak to you!
And transness has been pathologised to the extent that it is seen as mental illness, so much so that you need a medical diagnosis to be able to access different gender treatments. So trans voices are, in a way, seen as disabled voices or “mad voices”, or at least treated as such by medical professionals. And disabled voices are deemed unreliable –hence neither trans nor chronically ill voices are trusted, thanks to ableism.
Beyond that there is a distrust in trans voices also because of a huge fear of detransitioners, and the idea that trans people “don’t want it enough”. This becomes clear when you see that the A-UMC clinic in Amsterdam has explicitly stated that they will not employ trans people in their clinic, because although trans doctors are perhaps the most qualified to provide care for gender therapy, they are seen as biased. Whilst of course cis doctors, acting out in accordance with the business model that is made to discourage people transitioning are “neutral”. Yes that is heavy sarcasm. This is such a blatant distrust in trans voices and trans experiences, so we can see how easy it is for trans patients to be mistrusted. If you happen to be disabled and trans then this mistrust is even worse – and sadly disability, particularly mental illness or neurodivergence, is often used as a reason not to provide adequate gender care to people.
It seems to me that without being able to trust and believe chronically ill and trans experiences, there is no way to provide supportive, adequate and human care, because you are in fact treating them as less human. Care relationships require a vulnerability and trust to be formed, both ways, without the large power imbalances that are currently present in healthcare, and trans care. And for that to happen, trans and chronically ill experiences need to be taken seriously and believed, without years of evidence being demanded by way of validation.
There is no better trans healthcare without undermining and tackling ableism, and there is no undermining ableism without undermining transphobia within healthcare.
What to do about it?
This is for me only the beginning of exploring the links between ableism and transphobia, and there is definitely a lot more to be talked about, so if you have thoughts on this, or feel like I am incorrect about anything, please do drop a comment underneath – as a cis person (I think) I am more than willing to be corrected on anything you feel is wrong. I am posting the link to Transzorgnu, who were the organisers of the demo, plus the link to a petition created by the people behind @vugendermistreatment. Please do sign it, and if you are in the Netherlands, keep an eye on the rest of the events planned for the “Summer of trans rage”.
