Carerfication (A Word I Just Made Up)

Stock image of a disabled parking bay with the title Carerfication (A Word I just Made Up) overlaid on it

Carerfication is a word that I have coined, and it refers to the process by which individuals are forced into a carer role for a disabled loved one, by societal pressures/expectations as well as by other individuals in their lives. I needed a word that was specific to this experience; we have “parentification”, which is a useful piece of vocabulary for discussing specifically childhood experiences and a parent/child dynamic, and we have “adultification”, which again refers to children but this time specifically Black children who are expected to grow up faster than their white peers. These are incredibly useful words, but they don’t cover the whole picture of what I’m trying to convey with “carerfication”. 

Recently, someone I love very much was hospitalised with suicidal ideation, and held for less than 72 hours before being released back to us. On the day they wanted to release my loved one, I stormed into the hospital reception to beg someone, anyone to keep my person in longer, because we had no idea how we were going to keep them safe. I wound up on the phone, in tears and sitting on the pavement outside, because they wouldn’t budge – they insisted my person would be better off “in the community”, which might have been true a few hundred years ago when our communities were bigger than about five close friends and family members. As it stands, my person’s housemate and I were shitting ourselves when my person came home. 

Every argument I made for my person to stay in hospital was met with a steadfast insistence that my person needed to be in the community, and when I raised the issue of keeping my person away from their daily meds for their own safety, I was reassured that “their housemate can be in charge of that”. Their housemate is a warm, caring, diligent person whom I respect very much, but she’s also not a trained healthcare worker in any sense. I don’t actually know what the legalities are of us confiscating my person’s property, let alone physically restraining them like we’d had to on the day they were hospitalised. We certainly don’t have the right or the means to drug my person in the way that, you know, a hospital or something might be able to do.

This whole debacle disappointed me, but it didn’t shock me. I’d been met with “can your [loved one] look after you?”, “can you partner do it for you?” and variations upon “we don’t have the resources to look after you” throughout my own journey with the NHS. I want to pause here to mention that I think the NHS is an incredible body that does incredible things, and its purposeful underfunding is designed to erode confidence in it as a body. This means that even though I love the NHS to bits, I’m forced to consider things like private psychotherapy in order to have a hope in hell of receiving the care I need, but I’m not happy about it. One obvious way to alleviate this problem is to fund the NHS adequately, so that it doesn’t have to fob its responsibilities off onto members of the public.

In the UK, if you receive Carer’s Allowance (which is predicated on a whole host of things and which is unavailable to full-time students) you are paid £69.70 a week. To earn this princely sum, you have to be acting as a carer for at least 35 hours a week. The mathematically gifted among you may have already spotted that this amounts to just under £2 an hour, a mere fraction of the UK minimum wage which is set at £9.50 in 2022. Not only is that disgusting, but almost all carers end up putting in a lot more than that 35 hours, particularly if you live together. Let’s imagine that you get 9 restful hours of sleep a night, but your every waking moment is spent with, around or thinking about your disabled loved one, attending to their needs and supervising them. That means that you’re putting in about 105 hours a week, and your Carer’s Allowance comes out at £0.66/hour. I can hear you thinking, “Well, it wouldn’t be fair to pay them the same amount as professional carers, who’ve undergone training and have experience,” which I can kind of understand – but personally, I think that carers of loved ones are faced with a harder task, since they typically have zero training and experience and a great deal more emotional involvement. I can’t tell you what I think would be a fair wage for carers of loved ones, because frankly I don’t think there’s a fair way to wrangle someone into the role of “carer” and I don’t think it’s fair on disabled people to plug the gaps in their care with their own friends and family. 

Most of my firsthand experience with carerfication comes from the world of mental health treatment, for obvious reasons, but I’ve noticed it with physical disabilities, too. The fact that my partner can drive seems to negate the fact that I cannot, nor can I safely navigate public transit 100% of the time – so she’s expected to be my carer by way of driving me anywhere at any time, and that’s considered enough freedom of movement for me (even though there’s every possibility that she’s controlling or, I dunno, busy with her own life). She helps me phone the GP surgery because they don’t have a non-phone option for anxious bitches with auditory processing issues (like myself). Any practical thing that you can imagine being made more difficult by anxiety, trauma, joint pain or hypermobility is supposed to be done or helped with by my partner, or by my mum and friends when she isn’t around. This works for me, for now, because I’m in a relationship that is not controlling (and it doesn’t hurt that my partner has a healthcare background).

That last part is key. I firmly believe that inappropriate carerfication of other people in a disabled person’s life can hand their power and autonomy straight to an abuser, and makes us all more susceptible to physical, emotional, sexual and/or financial abuse.  When the care you need is constant and complex, like my person coming home from hospital, your power can be handed over to multiple people (you know, because we’re not professional carers and therefore have other things going on), which only increases the chances of one or more people taking advantage of this. Random members of the public are not only expected, but are actively encouraged to take control of disabled people’s medications, communication with their healthcare provider(s), means of leaving the house (“get your housemate to hide his keys” is not an appropriate response to “I want to walk into traffic,” just FYI), finances, any other admin, etc. It does not take a domestic violence expert to see how this could become a near-inescapable problem.

Even when this transfer of power is agreed upon and the carer in question is never going to be a dick about it, it can feel demeaning and shitty that someone who has another role in your life is forced to act as your carer. I’ve already ranted about dignity on here, but I really believe that that, more than independence, is the key here. The answer is not to force disabled people to conform to some idea of “independent” that not even every abled adult can reach; it’s to fund health and social care services and to provide disabled people with adequate care, from professionals who 1. are trained, 2. have multiple levels of oversight, 3. are supported themselves through Occupational Health, 4. are being paid fairly and 5. are able to go the fuck home after eight hours and forget about other people’s crises. When you expect friends and family to act as carers, you expect them to deal with a whole host of emotions including fear, sympathy, frustration and helplessness, as well as expecting non-emotional labour from them like running errands, household tasks etc. This can do a few things: it can make the disabled party feel guilty that their loved one is being pushed into this position; it can make the disabled party feel grossly undignified, especially where a loved one has to deal with physical things like helping with the toilet, medical devices etc.; and it can alter the relationships disabled people can form with their loved ones, since they will almost all include this wonky, undignified power dynamic to some extent. It’s really hard to have sex with the same person who has just helped wash your pee-soaked trousers, for example, so sexual and romantic relationships always take place in the context of an uphill battle to feel safe, grown-up and attractive – and again, this is not a problem that needs to exist. I understand that fully-trained carers don’t just fall out of the sky, but millions of pounds (it’s hard to pin down exact figures and they often come from dubious sources) are spent just on feeding MPs every year (whose salaries, by the way, are £84,144/year, or about 10 times the amount that you get to live on through Student Finance), and millions more on other pointless bullshit. I refuse to believe the money isn’t there, but the willingness definitely isn’t, especially while the government can so cheaply replace actual carers with members of the public. The dignity and needs of disabled people need to be prioritised over cash, as do the needs and feelings of people caring for their loved ones. All this blog post really aimed to do was introduce y’all to the word “carerfication” and explain why I think it’s its own problem, separate from phenomena like parentification and adultification (although definitely compounded by them – as a white person I’m not sure I can speak to the adultification part in too much detail, but in my experience, the normalisation of throwing caring responsibilities at people who are not prepared for them logically leads to the parentification of children and especially children of disabled adults). I don’t have all the answers, but I feel like this is an aspect of being disabled that we don’t yet have enough vocabulary for, so “carerfication” is my contribution.


PS: Among all my personal chaos, I recently had the opportunity to talk to Aria Vega on POV by Lustery, and I would love for y’all to check out my episode as well as, frankly, every episode – it’s a brilliant podcast 💙

Rest as Radical Resistance

I play with LEGO as a means to rest, so this photo is of a little LEGO housefront with a window and a door, atop a piece of green LEGO, with an above-ground pool, a fence, a flowerbed and a windmill also made of LEGO. Also, my hand is in this photo because I fucking suck at photography.

I have been on hiatus.

I’m actually not sure if I can call it a hiatus. I didn’t really intend to take a break from blogging, much like I didn’t really intend to take a break from working, talking to my friends or showering when not absolutely necessary. My mood took a bit of a nosedive a few weeks ago, and I’m slowly recovering the ability to function to my usual (and still less-than-optimal) degree.

I’ve had a lot to contend with, too: first, I graduated from uni (with a 1st class degree in English, baby!) and then I had a birthday, and then I had a tribunal about disability benefits to attend, and then I had to move out of my old flat. Note that I did not mention moving into any sort of new accommodation – because student tenancies are stupid, I am technically without a fixed address at the moment. My possessions are mostly in a storage unit, apart from a stash of clean knickers and sex toys at my Daddy’s house and some other bits and pieces scattered across the homes of my mum and my other two partners, 60 miles away. In case you were wondering how my autistic ass has been coping with the change: it’s been 19 days since the move and I’m still having nightmares about leaving possessions behind.

I’ve been feeling so angry with myself lately about letting my blog fall to the wayside. I love blogging. I’m passionate about sex and disability and relationships and kink. I feel so at home in the sex blogging community and I feel a sense of responsibility towards the people who read my content to churn out some more. But I don’t want to churn out crap, and I’ve barely been able to assemble a coherent Tweet lately, so I’ve been forced to let my brain have a break.

There’s been one other factor complicating the whole blogging thing: the seemingly imminent end of the world. There are children in cages in the U.S., Bitcoin setups using the same amount of energy as Denmark and so many more crises unfolding all at once. On the one hand, this makes writing about how much I love puppy play seem embarrassingly futile. I sometimes feel as if I should be chaining myself to something or scaling a monument or flying to America to vandalise ICE vans, but I can barely drag myself to the corner shop at the moment. I have to accept my own limits.

And then, on the other hand, I feel an enormous amount of self-imposed pressure to do what little good I can manage by writing about sex and kink, and hopefully making other people with non-mainstream sexual proclivities feel a little bit less alone. I would never devalue the work that other online activists do, and I do regard my blog – especially the bits about disability and queerness – as a form of activism. But I just haven’t been capable of writing anything that makes any fucking sense as of late (as evidenced by the three garbled documents in my Drafts folder right now, taunting me every time I open WordPress). That’s a limit that it’s been harder to accept, because “blogging more often” sounds like such an achievable goal on paper. In reality, though, I don’t even have the executive function to charge my laptop half the time.

In spite of knowing I need it, I’ve been regarding this accidental period of rest with a festering resentment. I know I need to slow down, I know I need to rest, and I know that I’m holding myself to standards I would never hold another person to, but I’ve still been beating myself up about not blogging, not working, not “achieving” anything. I also know, from therapy, that I’m supposed to ask myself, “What would I say to [insert loved one here] about this?” whenever I’m beating myself up. And I know what I would say.

Rest is an achievement. It’s not just a passive state of being; in this late capitalist hellscape, where we’re always under pressure to be doing something, it takes some real effort to allow ourselves to rest. I sometimes regard my own rest as a means to an end: if I can just rest for a while, I’ll be able to do something again soon after, and that makes resting worthwhile (if uncomfortable). But actually, resting doesn’t need to be a means to an end. Your rest doesn’t have to make you more productive in the long run, or better at your job, or any other thing besides rested.

There are bastards making money from our reluctance to rest. Employers who exploit their employees are an obvious example, but anything which is designed to keep you busy is also preventing you from resting. (This is one of the many, many reasons that diet culture is entirely, well, a cultural construct, and wouldn’t exist if it weren’t for several fucked up aspects of capitalism.) To consciously choose to rest, to just fucking chill, is to spit in those bastards’ proverbial faces.

And my rest, I suppose, is particularly profound because I’m multiply marginalised. Homophobia, transphobia, ableism, bigotry in general, they keep their victims on their toes. Being queer and AFAB and disabled means that I’m expected to work harder than my cishet, male, abled counterparts, and there’s something that feels quietly radical about just… not doing things. I’m not financially privileged enough to completely stop doing things, but spending a couple of weeks just taking some deep breaths and surviving as a queer, AFAB disabled person is not what bigots want me to do. Bigotry relies on us being exhausted and distracted and miserable, and taking some time to rest patently defies that. And I like to be defiant.

I wanted to explain my unexpected hiatus to y’all, but I also wanted to share my thoughts on rest because it really is difficult to rest and not feel guilty about it. I hope this blog post has helped to reassure at least one person that their rest is not just a state of inaction, or a means to boost their productivity – it is an act of self-love and of resistance, and I am exceptionally proud of anyone who is currently pulling it off.


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Help Wanted: How Does Service Space Feel For Me?

Image is a green Philips brand iron lying on top of a white item of clothing.

This post is part of a miniseries exploring the nuances of different headspaces I access through kink! You can find all the other posts in this series by clicking here, and I hope this one serves you well. (Get it? …I’m sorry.)


I grew up assigned female, disabled and queer in a misogynistic, ableist and queerphobic society. I also attended a fee-paying high school solely because of some inherited money that was tucked away in a trust fund, which did not automatically equate to living in a wealthy (or even, uh, financially comfortable) household. Society and my peers made it clear to me from day zero that there were aspects of my life and my identity – of the very foundation of my being – that were undesirable, unworthy or wholly unacceptable.

This did not make for a very sturdy foundation upon which to build self-esteem, as I’m sure you can imagine.

One of the most harmful concepts that our capitalist society presses upon us is that our value as human beings is directly and inextricably linked to our “productivity”. I’ve read a lot of leftist theory and done a whole lot more psychotherapy, but I don’t think it makes me a bad anti-capitalist punk to admit that it’s going to take me a very long time to truly unlearn this particular faulty concept. It’s everywhere.

I’ve already talked a fair bit about the relationship between my disability and my service, but I haven’t actually unpacked what service space feels like for me, or why I enjoy it. It starts with all of the above: in a society that values “productivity”, whatever that means, and with disability already holding me back from being productive in any sort of traditionally capitalist manner, I was desperate to be worthy.

This manifested in my vanilla life first. Some of the things I was doing were all well and good, like donating blood regularly and knitting for charity… but others, not so much. I continued emotionally draining, outright harmful friendships wherein I acted as an unqualified therapist and/or crisis worker because I was desperate to make a difference. I took on responsibilities I couldn’t or could barely carry out because of my disabilities, like staffing a bake sale (which my joints, anxiety and autism all prevented me from doing) and helping my mum redecorate her house from bottom to top. As a pattern of behaviour, it was unsustainable.

Enter service submission. I stumbled across the term during one of my many blog binges and realised I was already kinda-sorta enacting it in the relationship I was in at the time – when I visited my then-boyfriend, it made me feel a great deal less anxious and burdensome to tidy up a little, do some dishes or massage his back. I slowly came to notice that I was deriving a sense of satisfaction from these acts of service that was similar to that which I experienced when doing helpful things in vanilla life – but it felt more profound.

When I’m in service space, I often hyperfocus. In other settings, hyperfocus is a double-edged sword, because I can end up overexerting myself, or forgetting to attend to other things. Under the watchful eye of a dominant partner, though, I can hyperfocus for the length of time it takes to complete a specific task, and then be gently pulled back into reality. It borders on hypnotic. I can immerse myself in the minute details of a task with the safety net of being ordered to stop if it seems like I’m at risk of exhausting or hurting myself.

Within a 24/7 dynamic, my Daddy and I have been able to account for my tendency to hyperfocus even when he isn’t supervising. Sometimes, this involves him being very specific about the level of energy he wants me to put into a task – he might explain that he wants the kitchen “quickly cleaned”, which means that I load the dishwasher and wipe down the countertops – but only the countertops, not the microwave or the toaster or the cupboard doors, etc. Sometimes it also involves him reminding me to check in with myself about whether my joints are hurting and how many spoons I have left, and he specifically tells me that stopping when my mind and/or body want me to stop is included in the service task.

I feel useful when I serve, in the exact ways I was seeking to feel useful in vanilla life. Service space also feels a lot more psychologically safe because it’s so predictable and the parameters are so clear: I am given a task. My job is then to complete this task to the best of my ability, and/or to communicate with my Daddy about any difficulties I’m having with its completion. My Daddy commends me for my execution of the task and/or my insight and communication, and I glow with pride at having done a good job. My experience of service space is almost entirely psychological – the sensory components (like wiping things til they shine, or the smell of citrus dish soap) are a bonus, but entirely incidental to the headspace itself. With a partner giving me specific, achievable goals, I feel like the embodiment of that capitalist myth: a cog in a well-oiled machine. And because my service submission is entirely removed from capitalism, I feel like I’m at liberty to set boundaries and I can even run the risk of “failing” without worrying about the loss of my livelihood. I feel intensely, deliriously safe in service space.

I also feel genuinely pleased with myself for my tangible impact on my dominant’s life. Formalising acts like a back massage or loading the dishwasher by doing them within subspace can help to keep their significance in the forefront of both our minds, meaning that my partner rarely overlooks my labour and so I rarely feel taken for granted. My tangible impact on him and his praise in response to it starts to fill in the cracks in that foundation I mentioned earlier. It’s not a substitute or a replacement for self-worth, but it gives me somewhere safe and reliable to start rebuilding my self-worth all on my own.