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 💙

Loving A Paramedic During A Pandemic

Stock image of surgical face masks with a title overlaid on it which reads "Loving A Paramedic During A Pandemic"

Note: This post refers to the hypothetical death of a loved one, bulimia and suicidal ideation, as well as of course the Covid pandemic – I’ve got something a lot sexier coming soon, so if any of those topics are hard for you, please give this one a miss! You look after you 💙

I wrote this post mostly across Spring 2021 when I was very angry, and it shows. Enjoy!


March 2020

We’re on our way to Tesco for whatever bread and toilet paper they might have left. My fiancée doesn’t want to use her NHS ID to jump the queue; she feels it would be cheeky when she won’t be working in the coming 24 hours, and there’s nothing we’ll starve without.

The car is stopped at the crest of the hill before Tesco, waiting for the lights to change, and we’re talking about what happens if she dies.

At this point, we don’t know what Covid can and cannot do, nor what the NHS can and cannot do. The news is saturated with death and illness, and I fiddle with the shopping list as we discuss what happens if she becomes another tragedy. What happens with the house? The car? The PS4? She’s a registered organ donor. She doesn’t want a big, miserable funeral. I drag items from the shopping list around so that all the veg is together and so are all the soft drinks and snacks. 

What happens to me?

I try not to be selfish, but in the process I have to swallow my fear. It makes me think of my bulimia days, when everything I swallowed was fear, and I just had to hope I got somewhere private before I needed to puke it all back up. If not, I spent the day feeling tainted, terror casting unflattering shadows over my face.

I finally look her in the eye because I have to, because I have to tell her I love her. I have to tell her I’m proud of her, and that I bear no resentment towards her for running onto the front line, the house and the car and the me be damned. I would do the same thing, I tell her, and I knew she was a run-onto-the-front-line person when I proposed. Whatever happens over the next few months, with Covid or with anything else, we’re in it together.

The traffic moves and we inch towards Tesco with my now-immaculate shopping list.

 

Summer 2020

I couldn’t tell you what month it is. I’m being passed around the Midlands like a suicidal hot potato depending on who might be able to keep me alive this week. My fiancée is miles away, working long shifts and having wobbles in between them. It’s nearly the anniversary of the night I proposed, under the stars with a titanium ring (the most indestructible metal I could afford), promising her the rest of my life, or the rest of hers – whichever ends first.

I didn’t expect it to be a race, but Covid combined with the poverty of the NHS and the unremitting greed of the cunts in charge seem to have pushed us over the starting line. I do what little I can to slow her down – phone calls, gifts in Animal Crossing, every funny Internet picture I can find – but I’m busy tripping over my own feet, and the finish line keeps inching closer.

The graphs are curving upwards and I check them every 4p.m., then consult the news. My thumb hurts from switching between data and news and the social networks where my friends live and die. I click it back into place so I can send my fiancée another meme.

 

January 2021

To say I’m not a morning person is an understatement; it might be more accurate to say I’m barely a person in the mornings at all. Still, when my fiancée’s alarm goes off at 4 a.m., I stagger downstairs ahead of her. I get us both cans of Monster from the fridge and I pound mine like I’m a fresher again, only this time the fuzziness is exhaustion, not booze. I help her assemble her lunch, remind her to take her meds and tell her I love her at least a few times before she kisses me goodbye and heads off for another shift, all before the birds have started with their dawn chorus.

She tells me every time that I don’t have to get up with her, but truthfully I don’t know how many more of these bleary-eyed breakfasts we might have, and at least I get to nap during the day. Besides, I have to be the one to make her sandwiches, because I have to put love into them so they taste better.

 

When she brought Covid home, I wasn’t surprised. I knew it was only a matter of time, which is why I stopped visiting my mum (asthmatic, with a boyfriend in heart failure) when I started living with my fiancée. (I stopped visiting anyone, obviously, but I miss my mum the most, and she’s the person it would be the most dangerous for me to infect. Life is cruel like that.) I didn’t feel any fear that I hadn’t already faced and compartmentalised, even when it became evident I was Covid-positive too. I was irked by the facts of the situation, that this would mean two weeks of maddening self-isolation for us both and that I felt run down as all hell, but what I felt most was a hot, indignant anger – not at my fiancée, or even at whichever patient it might have been who gave her Covid, but at the people who didn’t care. 

I want to believe I’m a patient, compassionate person, but I was already infuriated by the people – on the news, on social media, that I see in town – who just didn’t care. I have some degree of sympathy for the people who believe that the coronavirus is a hoax or some kind of government/5G/Bill Gates plot, because I too am deeply untrusting, scared and confused. But the people who just didn’t give a shit, who are going to parties or baby showers or raves or their mate’s house just for a cheeky visit, were already pissing me off long before my fiancée tested positive. I’ve been spending long days alone with my thoughts while she worked, missing my mum and concerts and nights out with so much intensity that it sometimes physically hurt, and seeing story after story about people who flouted the rules simply because they wanted to, more than they wanted to keep other humans safe.

So I was already pissed off with people’s selfishness and recklessness, the government’s prioritisation of money over human lives and a thousand other things, when I found out that my missus now had an illness that we still know very little about (and what we do know isn’t reassuring), as a direct result of saving other people’s lives at work. Again, I want to believe that I’m patient and compassionate, but two weeks of monitoring our temperatures and oxygen sats in between aches and pains and a lot of coughing made me want to punch some people in the face. I want so badly to let go of this anger, which is white-hot enough to burn me, but I check the clock again, wondering if she’s been for her meal break yet (probably not), and I feel it sear my insides – but all I can do is wait, so I wait.

 

She arrives home safe and brings the cold in with her, the bite of January blowing through the hall and into the living room. I ask her about her shift and she tells what I already know: that it was exhausting, and miserable, and she missed me. We manage to scrape something or other together for dinner, we watch a YouTube video or five, and then she goes to bed. She apologises for being so tired, for not being talkative, for going so long without fucking me, and I wave all of it away. I don’t tell her how relieved I am, every time, that she got home in one piece. I don’t tell her that I can think of countless reasons she might not have – combative patients, cars that don’t stop for blue lights, a terror attack – but I do tell her that she doesn’t owe me an apology for anything.

The people who owe me a fucking apology are probably at a rave right now.