I want to talk about two aspects of health and several main themes:
One, intertwined illnesses: how they were related to intersexuality, that interconnectedness, the type of difficulties related to seeking treatments related to intersexuality as a trans person.
And two: the difficulty accessing appropriate care as an Aboriginal person, specifically related to accessing pain medication for chronic illnesses. The way that being on close the gap has affected the treatment I receive when seeking healthcare, and how those things might connect with each other.
For probably four years, maybe longer, I have been struggling with chronic pain and chronic illness as a result of what I perceive to be PTSD, but also because I have severe scoliosis, a number of joint problems, and also because I’m intersex. As a result of being intersex, my condition means that I have a number of hormonal issues that impact how my body produces stress hormones, and also how my body actually retains fluids, salt and fluids as well. This is something that’s only been connected up with my health issues fairly recently, although I have known that I was intersex in some degree probably for my entire life, and there have been a number of health issues throughout my life that have been related to it. I think that in terms of getting any medical care as an intersex person, it’s always very fraught. So, when I was younger, I probably would have preferred if people didn’t interfere with hormones at an earlier age, for me. Thankfully there was not much other kinds of medical interference, but in my late teens I was put on hormones to try and basically make me go through a female version of puberty, which retrospectively I would have preferred not to go through as a trans person, but not knowing that I was a trans person at that time, and being advised that it was health-related, that is what I accepted was happening. I guess since then, I actually don’t mind being on hormones, because it helps me regulate a lot of difficult things about my condition, but it would have been good to make that choice. I have really struggled to find an endocrinologist that can actually help me to regulate my hormones in a way that not trying to make me a boy or a girl physically, whatever that means, but endocrinologists, especially if they’re trans-friendly, are generally speaking trying to have an outcome that is not the outcome that I want, and so in Sydney, there’s probably two or three endocrinologists that you can access as a trans person and control your own hormones, and I haven’t been successful with either of them getting what I see as more of a health outcome rather than a hormonal outcome.
There have been a number of times when my health has been so bad from chronic illness and not being able to retain water that I’ve ended up in hospital and have not received proper treatment, but have been violently ill or passed out, and those are examples of times when I can relate to other people with chronic illness, when they say they’ve gone to hospital in extreme pain or in a very bad condition, and needed help, and felt powerless, so those would be times when I would say those were very confronting in terms of feeling powerless and not being able to get assistance.
There was one time when I went to hospital because I was so dehydrated that I was delusional and violently ill, and I spent maybe two nights or so there, and then the doctors wouldn’t give me a medical certificate for my job, and that really impacted my wellbeing, because a, I was anxious about missing work, but then b, it impacted the future outcomes of my job opportunities, because I had said that I was this unwell and there was no evidence provided for me to be able to provide my employer with it. So that would be an example of how even when I received health care, I wasn’t able to receive it in the full capacity, because I guess my condition wasn’t seen as severe of ‘real’, because it’s a chronic illness and people don’t think that those things are real conditions.
I find that there’s not a lot of transparency in terms of what’s going on. It was like this is what’s happened, you’re very dehydrated. You try to explain what the condition is, but that’s not a real consideration I think, like a lot of things I find around intersexuality are not treated as medical conditions, rather as variations or prepositions of something that you should be able to prevent it getting to that stage, but maybe you can’t because you can’t access the appropriate treatment to prevent it from getting to that stage. So that’s been my feeling generally speaking is that it’s not actually a medical condition, it’s like a predisposition that you’re responsible for managing.
It was kind of like oh, don’t worry, you’ve just got salt wasting and you’re dehydrated, so you just need to sit here for a long time and you’re fine. And I was like okay, that’s good, because I thought I was dying at this stage, but after a while and being rehydrated and receiving some sort of treatment, I was obviously okay, but I was incapacitated and in hospital for two days, and I had no evidence to support that.
I asked the doctor and I asked the nurse to ask the doctor to write me a medical certificate. They both said no. They said something like ‘we wouldn’t call this need for you to take time off’ or something along those lines.
At the time when they refused, I just felt oh, shit, now I have to think of an alternative or argue with someone, and probably I’ll need to go to work after this unless I’m going to lose my job.
At the time, I don’t think I was entitled to sick leave, but due to the work situation that I was in at the time, it was important that I had evidence that I was unwell, for my job security.
I was in a contract position, but it was at a very bad time that I was unwell, so I needed that backup to be like, ‘I actually was really sick, please don’t think that I’m not reliable.” It was a relatively new job as well, and I had just come from not being employed for quite some time, so I was very concerned about it.
Showing up at work without a medical certificate did have an impact. My employers’ trust for me generally speaking or taking me seriously when I’m ill in the future. And even now, I still have some hesitation about calling in sick to work. I still have to be pushed to call in sick when I’m unwell, because I’m worried that people won’t take what I’m saying seriously
Long-term, it has given me a lot of anxiety about going to hospital, but to be honest, I don’t think I’ve ever had a good experience of going to one, and that probably true for a lot of people, but I’ve never had a validating experience related to that when going to hospital, or even to a doctor, so I think I was quite accustomed to it by this stage to some extent, but that was very anxiety inducing, particularly in relation to employment for me.
When I come into a hospital for pain, what happens for me is that I have quite bad muscle pain, which I think is hormone-related as well, but I also have joint problems and I often have problems with either damaging or breaking my wrists or ankles, and hypermobile joints. My joints are painful a lot of the time, sometimes worse, and I have very severe scoliosis that I have to have physio treatment for once a week. So, there’s a whole combo of interconnected stuff going on there. I have been trying to seek some sort of medication to assist with that for about four years, and it was only this year when a doctor diagnosed me with fibromyalgia, and then I had to get my psychologist to write me a supporting letter to say that I needed access to medication as well as Valium as a muscle relaxant, and that was a supporting document that I was coming from an okay place asking this, and as far as any doctor that I’ve seen requesting this mediation knows, I have no history of addiction, I’ve never used pain medication before. The only reason I’m asking for it is just for symptomatic relief. I had previously been referred to a rheumatologist as well, but the rheumatologist was quite dismissive and didn’t check for fibromyalgia.
I can’t imagine feeling confident enough to seek pain medication in an in-patient setting. Because in an in-patient setting I don’t have an Aboriginal healthcare card, it’s only in an outpatient setting that I use CTG, which is just for prescription medication, I tend to not have as much trouble, but what I do have trouble with is getting people to put that I’m Aboriginal on paperwork in an in-patient setting. I think because I’m visibly fair-skinned, even though I tick Aboriginal, people don’t put it on my paperwork when I go to most medical professionals, and I have to insist that they put it on there, because it’s not only relevant to my health information, but also I want them to know how many Aboriginal people are coming through the health system. They need those stats. I’m aware that they need those stats cuz I work in the sector. So, it’s something that I really have to insist upon to get on my paperwork, and then once it’s on there, it creates problems. So it’s kind of like oh, there’s a situation where you would think maybe it would be better if I just didn’t say anything, but also it’s not really possible when it comes to your medical history and if you’re in something like the mental health system, you need someone who understands what intergenerational trauma is, which is something that people have asked me what it is in the past in healthcare settings.
I needed a mental health care plan, and they were like what do you have? And I was like PTSD, and they’re like yeah, and what else? And I’m like, I have PTSD from intergenerational trauma, so I need to be treated for that, and they’re like okay, so what’s intergenerational trauma? This was another GP asking me what intergenerational trauma was.
To be honest, it doesn’t surprise me. That’s actually happened to me twice when I’ve been for a mental health care plan. I don’t think the medical industry actually understands Aboriginal people at all, and what they think is ‘cultural’ is nonsense. There’s virtually no understanding of needs in relation to Aboriginal people.
I think the issue is that a lot of stuff about us is seen as cultural, and what it actually is is social. The problems that we have are not from our cultural background. The problems that we have are from how society treats us and how society expects that we are, and so the lack of education around intergenerational trauma indicates a lack of awareness and responsibility for genocide in Australia, that’s what that communicates to me. I guess if you want to talk about cultural training, what you really need is a historical understanding of the setting that Aboriginal people have to navigate. For example, if you don’t understand what intergenerational trauma is, then why would you understand why some Aboriginal people have substance abuse issues?
I think that in terms of being an Aboriginal transgender person, there is the element of surprise a lot, unless you’re familiar with the community, like increasingly now we have a lot more awareness, but if you looked Aboriginal before but then you are queer-looking, then ‘you’re not Aboriginal’. If you’re read as queer, then you’re not seen as Aboriginal, because Aboriginal people are imagined retrospectively and in a past where there was only men’s business and women’s business, which is actually not the case. So that can impact how people treat you as well.
Accessing Aboriginal healthcare services has a different array of issues. The reason for that is, largely speaking, confirmation of Aboriginality and the legalities around that, but also, there is a lot of evidence for trans and queer Aboriginal people not being able to access that documentation. So not only are trans and queer indigenous people not accessing those healthcare services, because many of us don’t feel comfortable, is that we legally can’t access some of them, so we legally find ourselves in a situation where there’s Aboriginal healthcare services or there’s queer healthcare services, but there’s nothing in between for us.
Queer healthcare services are few and far between as it stands, in terms of sexual health like not really. An example of this is [a Sydney-based LGBTI health services organisation’s] sexual health marketing campaign that targeted Aboriginal people that was like ‘HIV is deadly’, and this is an example of people thinking that this is a cultural term and misusing the term ‘deadly’. I think they were trying to make a joke about it, but it didn’t carry. This is just an example of how people think they’re making culturally specific services, but they’re ridiculous services. It doesn’t really matter how they’re using it, they’re still using it wrong, because if you’re not Aboriginal and you don’t use that word, then you don’t understand what that word means. So even if you were like ‘getting tested is deadly’, it’s still like you attempting to be culturally aware but it still doesn’t come across that way. What it communicates to me is that you don’t understand.
In terms of queer health services, it’s similar kind of stuff to regular health services in terms of being an Aboriginal person. They’re better in terms of being trans, but when it comes to other intersections, they’re not carrying as much.
[This is quite a complicated issue and it’s difficult to. understand if you’re not inside the community. I know that there are a lot of non-binary people, or we call them ‘GD people’, that feel quite left out by the rhetoric around ‘sistergirl’ and ‘brotherboy’. In terms of health services, relatively speaking, all the issues with non-binary erasure from outside that do carry over, and I don’t think it’s necessarily specific to the sister girl and brotherboy community There’s a lot of nuances to sistergirl and brotherboy identities that can be non-binary, for example, sistergirl would sometimes be a term for a cis man, so there is that nuance to it. Personally for me, my experience with my own community, I don’t find that if you want to talk about it being just sistergirl and brotherboy services, I don’t find that as bad, I think because I have a more complex understanding of that identity, but I do think that in terms of all trans services, even in terms of intersexuality or being a non-binary person, they are catered for transgender people that have binary identities and have very specific healthcare needs. There’s not much room for complexity in terms of treatment.]
I think for me in terms of my experience of access to hormones, it’s more tied up in trying to manage intersexuality than it is my trans identity, but at the same time, I still need access to an endocrinologist that understands what it’s like being trans, because it impacts the hormones they will prescribe you. Those binary standards impact my access to treatment, but I’m asking for a different kind of treatment. What they’re hearing is that I want to be a boy, but what I’m telling them is that I’m just trying to manage my hormones and be comfortable with everything else. It’s definitely the ‘affirm your gender package’, but my gender’s affirmed. I know that not the case for other people, and obviously, living in the trans community, I’m aware that that happens a lot. So, I think for me, I’m not looking to affirm anything. I’m just trying to have a better relationship with my body and get it working.
In terms of mental health services, I mentioned the issue with GPs asking me what intergenerational trauma is and PTSD. I guess in terms of… it is difficult for me to access mental health services that meet my needs entirely as an Aboriginal person, because to be honest, I would prefer not to be speaking to white people about my mental health concerns, but the options are pretty few and far between, and even then, other people of colour don’t have the same capacity for understanding. It’s a different life experience. In terms of accessing that, while there are some good mental health services in terms of being a queer person or a poly person, there are very few adequate mental health care services for indigenous people. Again, access to the indigenous-specific ones generally goes through Aboriginal healthcare, and isn’t accessible for people who don’t have confirmation of Aboriginality from the Commonwealth. And again, even if you get through that as a queer or trans person, you may not find someone that’s queer or trans friendly in that area.
Statistically speaking, there are few Aboriginal mental healthcare professionals… Generally speaking, it’s not really a friendly system to Aboriginal people. In my opinion, as someone that has been through the university system in a number of different disciplines, I don’t think the discipline itself in terms of training is very accessible for Aboriginal people. The reason I say that is because of a lot of essentialist assumptions that go into the training that mental health care professionals are given. I guess there’s a way to do it where some understanding of indigenous people is provided, but it’s optional. It’s a one- or two-units compulsory, and everything else is option, or it’s specialised.
I feel like I don’t have much wisdom to offer, because I haven’t had that much success thus far.
I think if you can find a good mental health professional, or at least one that will teach you or assist you in things that are quite menial, like if you have someone who can help you with bureaucracy, I find that is really important for most indigenous people, and also sex workers that I know rely a lot on healthcare professionals for helping them complete bureaucratic tasks that would be simple for some people, but are not simple for them. So definitely in that respect, even if you can’t find one that understands your needs entirely, if there are things that someone can help you with in a bureaucratic way, take those things to someone so that Medicare can pay, to help make your life easier.
In other circumstances, I’ve relied on mental healthcare professionals to help me with medical records for fibro or for chronic illness, just because I can’t get those records from a GP. A good trick is getting your psychologist or counsellor or social worker to help you with those records, because they can still document that your body is under stress or that you’re going through some stuff, and at least you have something to show for what you’re going through rather than being left with nothing or having your job in jeopardy, or feeling anxious about it.
With GPs, even just having general knowledge of specific services for Indigenous people or specific services for transgender people or both, ideally, for me would have made a big difference. There are some GPs that don’t fully understand what being intersex is, which is bizarre, as well as they don’t see this is a medical system that you’re part of no matter how problematic it is, and obviously not many people can control that, but if you aren’t aware of the services that are available, then I don’t really understand from a GP perspective what your function is. Isn’t your main function to connect people to appropriate services? So, if you don’t understand what Indigenous healthcare services there are around you, or if you don’t understand fundamental aspects of people’s needs and identities even in a health context, that would be a starting point. There should be information available and archived for you to do your job to be able to refer people to those specific services. I do know that that information is being produced, because my job is to produce it. I guess someone needs to connect them with that more. I do think that in terms of education, a lot of the fundamental issues with the lack of knowledge around diverse identities in our system is coming from the education system, so I guess that’s the starting place for these issues as well.
There are so many gaps, which is why I’m struggling to list everything. From an Aboriginal perspective, this is contentious, but I will always stand by this: confirmation of Aboriginality is a barrier to all aspects of full participation or full access to Indigenous services that are meant to be reparative, but instead, the process of gaining access to them is traumatic in itself. So, you have.to go through so much trauma to access a service that is meant to be available to you to compensate for trauma. So, for me, the greatest issue in terms of most Indigenous services is confirmation of Aboriginality. There is no other group in society that has to repeatedly, bureaucratically prove their identity or ethnicity to the government, and for so many reasons, and most of them are related to colonialism, there is no possible way that may Aboriginal people are able to prove that to the government, and there are so many reasons why they wouldn’t want to, as well. So, for me, that for Aboriginal people is the largest systemic issue in terms of healthcare access. Aside from that, I think the way that Indigenous people are spoken about in terms of the medical industry from the beginning of education is deeply flawed, and I think those two are probably the largest issues.
In the health system, obviously you’ve got racist stereotypes, but like I was saying before, there is a real retrospective attitude toward Indigenous people, and that makes it very easy to dismiss us, because if we only existed in the past or we previously were Aboriginal, then why would you imagine or invest in a future for us? For me, this is akin to ideological genocide. This pretty much perpetuates every system that we interact with, and perpetuates this idea that eventually we’ll be gone, and these services won’t be relevant anymore. We get preserved in time in this place that’s distinctly in the past, and because of that, for me that’s the main issue, but that has a lot of consequences, the main one being that people expect us not to exist in the present or the future, but there are others. Like thinking that ‘culturally appropriate’ means all kinds of ridiculous things, or thinking that there aren’t enough Indigenous doctors. There may not be enough Indigenous doctors or specialists, but there are a lot of Indigenous nurses, and reframing the priority of needing access to other Indigenous people or people that actually understand something about our experiences, accessing those things as the current system stands, you may not be able to access many Indigenous people with certain roles, but there are ways of reworking the system that could provide an Indigenous nurse to be present with a non-Indigenous doctor for example, or having an Indigenous psychiatrist train other psychiatrists. There are different ways to rework that system without having access to all the Aboriginal people that you want to have access to.
I think the hierarchy of the system is a big problem for that reason. I think that it’s not an excuse to be hiring poorly trained professionals. People make excuses that there aren’t enough Aboriginal professionals to meet people’s needs, and that’s not necessarily true. It doesn’t necessarily mean that. There are a lot of Aboriginal people in the healthcare system, and it depends on the level they’re at. It’s also not an excuse to hire people who are not educated about Aboriginal people in any way, or not trained in understanding what Aboriginal people need. Because there are enough Aboriginal people involved in the system, there are enough Aboriginal people that need healthcare, and there are enough Aboriginal people producing research for those healthcare professionals to be properly trained. I believe they have access to it.
In a lot of cases, the people that have the most contact with patients, in that context, those people are experts in that area, but they’re not treated or paid as experts. Again, it’s not an excuse for people not to be trained, because there are people that have very good training and very good understanding, and extended contact– Indigenous and non-Indigenous professionals– but they’re not valued, or they’re just not enabled to share the value and the knowledge that they have in a way that could be useful for the entire system.
I think in terms of who has knowledge and how that knowledge is valued in the medical system, that’s important. Stuff like supporting nurses that want to and could potentially advance to become doctors, using nurses and paying nurses to have an educational role. I know there are some Indigenous nurses doing alternative roles like that, but the people they’re educating are not necessarily above them, they’re by and large ‘below them’ in terms of this hierarchy that we’re talking about. So, this wealth of knowledge is shared to social workers or shared to everybody else in the system, but when it comes to people above… GPs and doctors upward… this kind of information doesn’t seem to be reaching that level because of the value system.
So, in most cases, we’ve got a lot of Indigenous people that work as trainers in terms of cultural competency, but in terms of how that translates to a medical profession, it doesn’t seem to be working. And when it does happen, the level of cultural competency could use reform as well. The training that is offered is very shallow, it’s a very shallow understanding. Of course, when you consider positionality, in terms of the research that informs training, one Indigenous person’s positionality on what constitutes cultural competence is versus another person’s extremely different already, but having a person that works in the sector that has that knowledge and is an Indigenous person and has that level of competency and has long-term experience working with Indigenous people, that should be the person training other people in that field. But instead, usually it’s some other person that has some level of cultural training– which is good for other circumstances, but it’s not a medical-specific circumstance. I think people really struggle to differentiate between the different circumstantial needs in terms of diversity of experience for Indigenous people, and I think that the only people that could offer that would be medical professionals in that specific circumstance, or to some extent not just nurses, but certainly other people have a lot to offer there as well. But instead, we are always given a blanket cultural competency in every single profession. That’s meant to translate to every single profession and every single industry, and it’s simply not the case.
In this day and age, it’s laughable that a non-Aboriginal person is delivering the cultural competency training. White people are seen as the authority on all other people. For example, I work in a [workplace de-identified] [for people] that want to learn about Aboriginal culture. It’s literally Aboriginal 101, but that’s Indigenous people teaching that unit, but what we can teach you in that unit is cultural competency, but it’s not transferrable to every single industry and every single circumstance and every single location. That’s why a fundamental aspect of delivering ethical services or conducting ethical research with Indigenous people is that you need to take positionality into account. Because even non-Indigenous people providing services to Aboriginal people or conducting research on Aboriginal people, which is laughable at this time because it’s already been shown not to work, you cannot translate general cultural knowledge to every single field. You need Indigenous people in that field providing the accumulated knowledge they have obtained from that field. Not a single Indigenous person will be able to provide you with the knowledge and competency you need for every industry, and this is the model that we have currently, is that, mostly, Indigenous people are hired as trainers for businesses across the board. This is okay if it’s something lower stakes, but for things like healthcare or education or other things that are fundamental to people’s wellbeing, it’s not working.