I want my humanity back

At 3 AM last Thursday, my partner awoke in excruciating pain in her back and stomach. While they'd been having back flare-ups for almost two years now, they almost always passed with painkillers and a heat or cold pack applied to the back. This time, despite best efforts, the pain simply didn't stop. It was at this point that I think I made one of the worst decisions of my relationship. My partner was in enough pain that, at around 6 AM, with the pain not stopping, they brought up calling an ambulance to get them to the ER. And I, fool that I am, sleep-deprived (I'd had no uninterrupted sleep thanks to flare-ups for almost a week at that point), thinking that this was simply an unusually bad case of what we were told by medical professionals was a back/spine issue and panicked by the thought of having to pay for an ambulance (New Zealand's healthcare system is fully funded, but ambulances are not and a trip can cost thousands of dollars) and completely fuck up our tenuous household finances, made us wait another two hours to catch a bus to the hospital. Stupid and the cause of needless pain.

After an annoyingly long wait at the ER, we found that my partner had an inflamed gallbladder. In ultrasound scans the next morning, the radiologists found a whole lot of gallstones, including one a full centimetre across blocking the bile duct, which was the source of all the pain. Naturally, surgery was indicated, and thus my partner had to deal with a five-day hospital stay. When the surgeons, after a number of delays, managed to get to my partner, they found that the gallbladder had almost perforated. My partner's at home and on the mend now, and I think I've partially redeemed myself by being much more effectively supportive during the hospital stay (I was lucky enough to complete a small Shopify project the week before, so I had enough money on hand that I was able to be by their side for most of the time) and right now, but I have to admit I'm still kicking myself over that first morning.

As much as I feel guilty about that awful decision, what scares me more is what it says about what the last two-and-a-bit years have done to me. It feels, more than anything, as though parts of my humanity have been broken or damaged by what we've lived through and what people have done to my loved ones and I. Consider that, in two and a half-years we've dealt with eighteen months of unemployment and a year of scraping by on very limited contracting and consulting income. The financial stress has been constant. My partner has had, so far, two abdominal surgeries in two years, caused by various chronic health issues, and their mother died of a terminal and rather painful cancer in between those. And of course, for all of 2025, we've had to live with a fascist regime in the USA doing everything they can to eradicate trans people and empowering every damned bigot the world over to behave in actively transphobic ways in the process.

A household can be resilient for a while. We, being clever and capable, have been able to be resilient and keep trying to improve our situation for a very long while. But there are only so many reserves that we can have, and once you've exhausted enough of them, you start damaging your ability to be human trying to keep everything together and barely surviving. I'm starting to feel the damage, and I badly want the lost parts of my humanity back.

But wait a minute: why were we in this situation in the first place? Why was my partner repeatedly, over the period of more than a year, brushed off and denied a referral for an ultrasound? Why were their symptoms and their voice disregarded by the medical system until their gallbladder was actively perforated? Why, despite my clear skill and capability, have I been reduced to economic conditions that make calling an ambulance feel prohibitively expensive? Why do I describe "being able to visit my partner in hospital" as being extremely lucky? And is anyone going to take accountability for the upstream decisions that led to this shitshow?

Take my partner's GP, for example. They ignored my partner's worsening symptoms for almost two years, prescribing drugs to control the purported "other problems" that were causing the issue and repeatedly ignoring requests for a referral for an ultrasound. In the New Zealand system, you need referrals from your GP for a lot of these procedures even if you have private insurance, and so this was a massive barrier to getting the scans done. It took, in the end, a perforated gallbladder and an emergency room visit to get someone to look at the damned thing. While I'm sure there are some kind of extenuating circumstances (just take your pick of the excuses: underfunding and understaffing are particularly popular), the fact is that they fucked up and denied my partner help, and they have a lot more power to change my partner's circumstances than I do. And yet, there'll be no accountability from them, no apology, no restitution to my partner for stringing them along for years. At best, they might feel a little bad for a moment, then move on with their day and give it no more thought. So, almost two years of pain, some of it really serious and ending in a five day holiday stay for my partner, hopeless levels of sleep deprivation and a massively disrupted week for me creating the perfect environment for me to make a dumbshit decision that caused my partner unnecessary pain, and maybe a few minutes of feeling a little bad for the GP? Does that seem entirely fair?

Looking further afield, what about the hiring managers that rejected me on transphobic grounds? I've now had fifteen interview processes where I've gotten through to the very final stages, only to be rejected at the last minute, in the last two-and-a-half years. Looking at unemployment rates for trans people (estimates vary, but they're usually between 15% and 50%), and taking underemployment into account, it's clear that there is a strong selection effect against trans people in the workplace, and with that as a prior, even if most of the rejections were for "valid" reasons, it's highly likely that transphobia was the dominant or only factor in at least two or three of those rejections, and that as the most qualified candidate I was rejected on grounds of transness alone (I could do some more elaborate modelling, but I think there's enough evidence to say that it's probably happened at least a couple of times, especially given the fact that these are cases where I got through to the very last stage). These jobs were at salaries that would have been life-changing for our household, and would certainly have given me the stability and peace of mind that would have let me get my partner to hospital quickly and efficiently without worrying about jeopardising our household's ability to stay alive. We can conclude from this that there are a solid half a dozen people out there (given the average number of people involved in a hiring decision), who are directly responsible for leaving our household consistently strained and limited in options, and thus constantly exhausted and prone to poor decisions. Had they not been bigoted, our situation would have been a lot better. But they chose to make the bigoted choice, and thus had a direct effect on creating an environment that causes our household pain and makes it hard for us to function as well and we otherwise could. They will, of course, never even see the effects of their decision, let alone be held accountable for it: they'll drift through the world in their usual way, happily convinced that they always make the right choice and pick the right candidate.

The watchword, it seems, is impunity. People who exercise power in greater or lesser ways in this society are completely unaccountable to those of us whose lives their decisions affect. It's at its most obvious (of course) in our politics: even in nominal democracies, elected officials behave as though they're completely unbound by any duty to enact what their voters want. It's not just a question of moneyed interests controlling them, but that they feel completely no responsibility to anyone but their donors. Of course, impunity in tech is also rampant: OpenAI's persistent denial of any responsibility for people killing themselves or others due to ChatGPT's influence is impunity and lack of accountability on a grotesque level. And yes, it's leaked into general society. People in positions of power are almost never made to answer for their decisions as they apply to people seen as "lesser". Seldom is there any attempt to make them change, and even when one of us lesser beings, through extreme travails and hard work, manages to prove wrongdoing, the consequence is usually minor. None of us, for that matter, ever really get our problems fixed or get compensated for the harms done to us. Our recourse is very much limited to what we can do ourselves, and with our limited resources, well... there's just not much we can make stick.

Moreover, it's not just that impunity is allowed, it's actively mandated. Consider, for a moment, what would happen if any of these people admitted that they made a mistake, or that the way they acted caused harm to the people whose lives they were influencing. More likely than not, they'd be torn apart by their colleagues who never admitted to any mistakes or wrongdoing, acted with complete impunity and put up an image of perfection more effectively. If they tried to find a different job, they'd likely be rejected in favour of people who were able to shed accountability and fail upwards (the empty calories of the working world). Before too long, they'd find themselves at the mercy of the people who mistreat them, in just the same position as us. And while we didn't exactly have much of a choice in the matter (transition or death isn't a choice), well... these people have families, they're not used to being treated like shit, and I suspect that for a lot of them, being in our position is basically their greatest fear. So, to stay in everyone's good books, they act with complete disregard for us because it's what keeps them alive.

The Just World Delusion

If this lack of accountability only left the people who should be accountable off the hook, that would perhaps be OK. If we could accept that "sometimes things just happen", this would still be awful, but it could be liveable. Unfortunately, accountability is a conserved quantity and humans always need someone to blame, so if the people that should be accountable aren't, the victims of this vast, staggering unfairness always end up, in the end, blamed and "held accountable" for what happened to them.

My partner's gallstones were explained away as a whole laundry list of different issues. Perhaps it was their posture being wrong. Maybe it was insufficient exercise, or bad diet. Or perhaps it was irritable bowel syndrome. Anything but the actual cause seemed to be on the table, with a particular preferences for explanations that would put them at fault. Every time she asked for an ultrasound, one of those would come up, she'd get given some drugs to mask the pain and make the problem go away, and the referral would mysteriously disappear.

For my part, while I'm lucky enough to have a fairly strong community of lettered people and software nerds around me, the mood from most people with money, power or influence, and even the general population over the last few years has been that what's been happening to us is actually our fault somehow. Transphobia (despite all the evidence to the contrary) apparently has nothing to do with my difficulty finding work: it's all to do with my CV being wrong (despite over a dozen final stage interviews, which you do not tend to get to with an awful CV), with my interview manner (again, you would think that if this were a problem it would flag earlier than three or four interviews in), with me expecting too senior a position or being unwilling to look for work outside of software (the first is offensive and the second is flat untrue: I've tried to do the career change thing several times but always wind up back in tech) or my fairly outspoken blog and personality (you would think that if I'm getting a consistent 7,000-10,000 hits on my articles these days and have a significant reader base, that might be helping my career rather than hindering it). And sure, some of these things may well be true to an extent: I'm far from a perfect human and I have scope to improve how I do in these settings. But there's a persistent refusal to allow that perhaps, just perhaps, those factors aren't quite enough to explain everything that's happening.

But no, neither of us get the benefit of the doubt or any thought that our circumstances might be other than our fault. We must have done something wrong, otherwise we wouldn't be suffering, would we? We must have chosen to inflict this suffering on ourselves, and therefore it's not the more powerful people who should be accountable to ourselves, but us who should be accountable to the people in power for inconveniencing them with our suffering. We end up, in the final account, being actively punished for what other people do to us.

Homo Sacer

Combine the mandated impunity on the part of the powerful with the Just World delusion, apply that to the experiences of heavily marginalised minorities, and you wind up with a situation where, broadly speaking, nobody has the luxury of being fully human any more. In the case of the people in power, the demand is first and foremost that you're unable to show empathy or care at all for the people who are supposedly beneath you: you are only allowed to care about your own self-interest in a very narrow kind of way, and maybe the interests of those above you if you're foolish enough. To occupy a position where you have any level of influence over the lives of others these days, you thus have to amputate any incorrect emotions or care than you might harbour. This self-mutilation means that people with any kind of power over others can't live in a fully human way: their humanity, inasmuch as they get to exercise it at all, has to come out in very restricted, socially acceptable forms (I'd be remiss not to point out that this is has a lot of explanatory power when it comes to things like corporate social responsibility and corporate diversity programs). They aren't allowed to exercise empathy, individual judgement or any of the things we expect of a reasonable human with agency. The impression I get, honestly, is that this really fucks up a lot of people. The people with high levels of empathy and care are eventually just forced out or leave, and the people who are just able to survive are consistently miserable and suffer from serious mental health issues.

As for us, well, the message is basically "you're not worthy of being allowed to care for yourself or others". We're only allowed the care or medical attention that the people with power over us think we need, no matter how checked-out and careless those authorities are or whether we might be experiencing something serious. We're not allowed the work that we need to feel like we're contributing meaningfully to the world we live in, or the money that we need to live beyond bare subsistence. We're not allowed the time, rest or resources that we need to form and maintain proper relationships with each other, think clearly or exercise creativity. Any remedy to this that is suggested to us usually boils down to "stop caring about yourself or other people". My parents insisted on constant, slow but subtle pressure on me to detransition or at least to de-emphasise my gender, while simultaneously suggesting that I take on manual labour work. And let's face it: while I certainly don't think I'm too good for it or any such shit, putting me on a construction team would be a complete, unmitigated disaster. Very few of the organisations that are supposedly meant to help people in our situation have any idea how to help people like us. And as for career/business advice? 95% of what I'm picking up seems to simply be "feign submissiveness while actually being a sociopathic grifter": two of the hardest things to fake in the world, and both things that I think I'm incapable of actually doing for real. This is an impossible situation: to be capable of caring for myself and my loved ones, I have to turn myself into the kind of person that can't care probably. And if I don't, we'll be driven to such levels of burnout and paucity that our ability to care will deteriorate even further than it already has.

Being told by the world you live in that you're not worthy of being allowed to care for the ones you love is one of the more painful things I've lived through. Not only does it suggest that I'm not worthy of human dignity myself, it says, loud and clear, that because society does not think we are human that we won't be allowed to behave humanely. Not content with taking our livelihoods, our security, our dignity and our right to contribute positively to this world, they want to deprive us of the ability to exercise our virtue. We will be made to be so tired, so stressed, so poor, so sick and so broken-down that we can't manage to care for our loved ones properly without fucking things up, if we're able to do it at all. We will be stripped of our communities and our families, we will be isolated and we will be pushed to the limit of dignity afforded to a bare, unconnected, impoverished human: Homo Sacer in Roman Law, or a person deprived of all legal protections, the very right to interconnection and interrelationship, free to be killed with impunity by anyone who feels like it.

Obviously this is happening in respect to the most vulnerable minorities first: us trans people, disabled people and the unemployed (who are, of course, disproportionately people of colour). It won't stop there though: if something doesn't change fast, more and more of us will be deprived of the right or ability to care, and the further it goes before this whole shitty thing collapses, the worse things are going to get for everyone.

I beg you, just let me get my humanity back

I've written much about many of the things that are hopelessly sick about our society. Usually, I try and give a solution of some kind. But I just don't think I can this time.

I can deal with being excluded from work that our society treats as prestigious. I can deal with not having much money and fretting about how I'm going to pay rent and bills and everything else you need to live. I can deal with being treated like shit by people around me and with suspicion by the state.

... I don't think I can deal with being brought to the point where I can't effectively look after the people I care about. I can't handle seeing my partner in excruciating pain and worrying, in equal measure to worrying about her state, about the potential for this to bankrupt our household. I can't cope with the stress, the sleep deprivation and the constant gnawing worry making it increasingly hard to maintain my social connections. I cannot cope with seeing my friends overseas suffer and being unable to do even a little to help because I'm barely scraping by on a mixture of occasional contracting work and donations from readers. I can't cope with being told by the world that I don't deserve the luxury of being able to care about others. And I sure as fuck can't cope with being told that this is somehow all my fault.

We've tried a lot of things to change our situation, and we will keep trying more, and who knows, perhaps something will stick eventually. But that's not going to do, and keeping pushing without space for recovery after all of this is only going to do more damage. In the end, for us to be more human, we're going to need people with power to be more human to us. And I have no idea how that's going to happen.

What I do know, though, is that this whole situation is obscene. A whole bunch of systematic failures and bigotries have conspired to make the lives of two people an absolute hell for almost three years now. People in power have behaved inhumanly, and thus treated us as if we were inhuman. We're worn down to the point where even our ability to care for each other is starting to suffer. And I hate to stress this, but we're the lucky ones. We have resources, we know how to navigate institutions, we're smart and we look like we're members of the favoured ethnic group in our society. I'm especially lucky in that I can write well enough to sometimes be heard, by at least a few thousand people. When you read this and what we've been through, understand that there are a lot of people out there who have it ten or a hundred times worse.

When you believe that every human life is essentially infinitely valuable, this is intolerable. So while I don't have any solution for you all today, we desperately need to find one. Because I'm tired beyond belief of us not being allowed to be properly human.

If you're minded to help and know of opportunities, I could really do with some relatively low-stress engagements or perhaps even a part-time job in the tech or data spaces: just something to give us a little stability while we recover from this and let me build my business more sustainably. I am familiar with the Shopify ecosystem and an excellent statistician (among a bunch of other things) and right now, I really don't object at all to boring or routine work. We need to be able to rest and not stress for a few months, I think.