The UK Benefits System Is Making Me Suicidal

A stock photo, via Pexels, of coins, overlaid with the title "The UK Benefits System Is Making Me Suicidal" because I couldn't find another image to encapsulate the PIP experience

Note: As well as talking about suicidal feelings related to the PIP and Universal Credit systems, this post briefly mentions self-harm and gaslighting.


Let’s start from the beginning: the first time I claimed benefits, when I applied for PIP in November of 2017. PIP, managed and awarded by the Department for Work and Pensions (or DWP) is awarded to disabled people when their disability makes their day-to-day life more difficult. It stands for ‘Personal Independence Payments’; you can imagine, especially if you read my post on the myth of independence, my disdain for the name, but that quickly became the least of my problems. 

I vaguely remember that the man on the phone who set up my claim was nice and inoffensive, but I remember with clarity which part of my university I was sitting in when I made the call, my back to the vending machines as I sat on some chair or sofa made of prickly, cheap magenta fabric. I remember these details, because for me, claiming PIP was a big deal. It was an acknowledgement of my complex additional needs and a big step on my journey to accepting that I’m disabled, and that that’s okay. 

Except, uh, the government had other ideas.

To claim PIP, you first fill out a 33-page form which asks you, in excruciating detail, “how your disability affects you”. The form asks about your toileting habits and your abilities to keep yourself clean, which makes it more than a little uncomfortable to fill out, especially if you’re asking somebody else for help with it. You get a hearty 3 months to fill it out and return it, which is a bonus, but the process is miserable however long it takes you. Afterwards, you send off your form and wait patiently for an assessment appointment, which takes insane amounts of time, and then you attend your assessment.

This is when you learn that what you put on your form did not matter.

They ask you more or less the same questions they asked on the form, but this time in person (or, during these times of Covid, over the phone) and you answer them. You’re allowed to bring another person for support and to help answer questions, but the assessor gets to run the show, and one bitc–valuable employee of Capita didn’t allow my partner to speak at all until the very end, something I was absolutely not prepared for. 

Don’t worry, though, because that doesn’t matter either! Regardless of what you actually say or how you actually behave, they’ll send you a decision letter (many weeks later) that will make you want to kill yourself. Mine described my demeanour as “relaxed and calm”, which is a very odd interpretation of “so anxious that I was actively pulling scabs off of self-harm wounds”, and contained some outright lies as well as some fantastic leaps of logic (like, I mentioned enjoying video games so they decided that I didn’t have any problems with self-motivation. I think I brought up video games as an example of something that distracts me so much that I forget I’m hungry, thirsty, in pain or in need of a wee, but they hear what fits their agenda). 

This is the bit that makes me want to kill myself: when I have been vulnerable and poured hours into a 33-page, honest reflection of my life as disabled person, and then I receive a letter that makes me doubt my memories of the appointment, informing me that I actually don’t struggle with anything. From that, my disordered brain extrapolates that I must be an abled person who is just being an over-sensitive baby about the fact that they can’t cope with adult life. It takes my support network a lot of labour to help me stop spiralling in that direction.

If you want to appeal (and you probably will), you first send a request for “mandatory reconsideration”, which you also spend extremely painful hours writing. You send that off, you wait more weeks, and then, usually, you get rejected again. If you haven’t already committed Capita-gaslighting-related suicide or starved to death, you might choose to take it all the way to a tribunal.

Remember those weeks of waiting I described earlier? Weak sauce. To get a tribunal date took me, I believe, over a year. I phoned every couple of months to check they hadn’t forgotten about me, and each time I asked I was told some absurd number of weeks by helpline workers who ranged from bright and helpful to sounding genuinely annoyed I had called. I don’t keep good records, but it looks like I was preparing for my tribunal on the 30th July, 2019. 

That is not a typo. I started my claim in 2017, and after months of waiting and panicking and doubting my own reality, I finally found someone who would listen to me. In the middle of 2019.

The tribunal was, oddly, the most painless part of the whole affair. Apart from the general terror induced by being in a new setting and trying to communicate with real adults, I felt at the time like they were listening, and I was proven right when their decision came through: I did, and do, qualify for PIP. It was a huge relief.

Until late in 2020, when PIP stopped appearing in my account. I phoned them, and apparently I had been sent a letter about a reassessment, to an old address that I no longer lived at. They didn’t, at any point, seem to think that they hadn’t heard back from me because, oh, I dunno, I’m too disabled to keep all my records up-to-date? They didn’t think that maybe they should try my phone number, which they also had on file, to check I had received the letter (or at least to check I wasn’t dead). So instead of reassessing me and continuing my claim, they stopped it altogether, and set me back to square one.

The word count on this post is getting daunting and I haven’t even ranted about the bitch who didn’t note down my use of the Nottingham Sexual Violence Service because “we can’t report on anything that happened previously, including promiscuous behaviour”, but I don’t really need to study her in detail, because she is one cog in a violent machine. 

And I haven’t even started on my rant about Universal Credit.

Universal Credit is what you get if you don’t have enough income to stay alive. They were, when I applied in the summer of 2020, orders of magnitude quicker than PIP, but the problem with Universal Credit is that it’s seemingly designed to make your life so miserable that you give up and get a job. You’re assigned a work coach, who phones you too often and with too little notice to chide you about not having a better job yet. (Mine did not, but I think only because I’m disabled and was in crisis.) They’re meant to help you through the process of being declared “Not fit for work”, which grants you an extra £300 or so a month – this was less painful than PIP, and I was successful first time, but it still involved filling out a long, miserable form. They also tell you what you need to do admin-wise, such as turning your claim into a joint claim when you move in with your partner.

Turning my claim into a couples’ claim when I moved in with my fiancee meant losing the “housing costs” part of my Universal Credit, but I expected that. What I did not expect was for her income to be used as a reason to give me literally no money. The “Not fit for work” component gets deducted from just like the rest of it, so if your partner earns money, you get nothing. If you have trauma about being dependent on someone else for money and housing, this may make you want to kill yourself.

If that doesn’t, maybe this will: if someone in the household is earning, they don’t necessarily pay you the same amount every month. On average, you get about four days’ notice regarding what they’ll be paying you this month. It doesn’t matter if you need to budget! You spend the whole month not knowing what money you’ll have next month, and then you have four days to do some very intense maths. Maths that makes you a little suicidal, you know, because you know that even if you can make ends meet this month, next month might not yield a penny of Universal Credit.

My entire experience with this system has been negative. I want to be fair, but there is literally nothing nice to say about the UK benefits system. It is killing people. It is trying to kill me. I just wanted to share a brief (believe me) summary of my experiences with the DWP; I don’t have a grand point to make here besides, “Wow, this fucking sucks. It’s disgusting that the government is making people suffer to this extent simply because they’re disabled and/or poor. There are better ways to do this, but they’ve been foregone for a reason: the cheapest, easiest thing for a government to do is to drive people away from claiming benefits wherever possible, regardless of whether they need or deserve them. This just really fucking sucks.”

Disability, Dignity and the Myth of Independence

Stock image of the side of a door with keys inserted in the keyhole, primarily because it was the nicest thing that came up when i searched for "access".

I am well and truly fed up with people talking to me – or at me – about disability & independence.

You hear it in school. You hear it in college. You hear it in media about or relating to disability. Even the UK government calls the benefits it awards to disabled people “Personal Independence Payments”. And honestly? It gets on my tired, disabled nerves.

It gets on my nerves because very few people are truly independent. Have you ever ordered a pizza? You depended on somebody else to cook and deliver it. Have you ever made a phone call? You depended on the engineers who made that possible and on the person who sold you your phone. Even when people go off-grid, living self-sufficiently in reclaimed shipping containers, they’re often relying on the inventors and manufacturers of solar panels. I cannot think of a single person who is actually truly independent, because humans are social animals who are hardwired to rely on, and to help, other humans.

So why do I, as a disabled young adult, have to strive for some arbitrary level of independence that is vaguely defined and contrary to human nature?

People talk about independence like it should be the end goal for many folks with disabilities. The ideal disabled person, in society’s eyes, is one who can go places alone, do their grocery shopping on their own, complete household tasks unassisted and rely on nobody. Which is especially weird when you consider the number of adult men who have no clue how to do laundry or where to find vegetables in a supermarket, having sailed from life with parents to life with a partner who, if they’re female or assigned female, will do all of those things for them. In suggesting that disabled people should aim to – or want to – reach a level of independence whereby they don’t need to live with somebody or use the services of a carer, we’re holding disabled people to a higher standard than lazy men without disabilities.

Holding disabled people to high standards isn’t new, of course; one need only glance at the coverage of any Paralympics event to realise that disabled people are expected either to be groundbreakingly good at something or to melt into the background, meek and inoffensive. Expecting disabled people to be more independent than their abled peers isn’t outside of the norm, but it is damaging and hurtful to those of us who might never be able to live alone or who might always need to phone their mum before sending an email (which I definitely do). I’ve learned not to feel bad that I’ll never be a Paralympic athlete, or Rain Man, but I still feel bad that I’m not the wholly independent disabled person that I’m allegedly supposed to be.

I propose that we shift our focus away from independence, and instead look to a more subjective, holistic measure of quality of life for disabled people: dignity.

The wonderful thing about promoting dignity, rather than independence, is that its parameters change from person to person. For example: Alex, Bobby and Carly all have a disability that makes unlacing boots difficult for them. Alex feels undignified when xir partner unlaces xir boots for them, so xe spends the extra time practicing unlacing xir boots and mastering the use of a shoehorn to make the process easier. Bobby feels undignified when he’s bent over, struggling with his laces for fourteen full minutes, so he asks his friend to give him a hand. Carly, meanwhile, finds that both of those options undermine her personal sense of dignity, so she only buys and wears boots with elastic and no laces at all.

That last sentence is important – specifically, the part about Carly’s “personal sense of dignity”. We all experience dignity differently and can find different situations more or less dignified depending on our cultural backgrounds, personal hang-ups and many other factors. Independence is a rigid, standardised goal that looks similar for everybody who strives for it, but dignity is a personal, flexible goal that is achievable for everyone.

Some people probably wouldn’t feel dignified rocking backwards and forwards in a shopping centre, humming to themselves – but that, for me, feels more dignified than staying home, and certainly more dignified than a full-scale meltdown in a public place. The beauty of it is that I get to decide what makes me feel comfortable and act accordingly, without worrying that I’m not “independent” enough, and also without any external pressure to eventually “progress” to not using my tried-and-tested coping strategies, including reliance on my support network.

I don’t want to strive for independence. I’m a human, living in society, and I want to be able to lean on other people when I need to without guilt. I’m going to strive for dignity instead, however that looks for me.


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Pride: A Complicated Experience

Stock photo of glitter laid out in stripes to form a rainbow. Glitter is present at a lot of Pride events, in case you didn't know ;)

I haven’t been to a tonne of Pride events.

I came out to myself as bi when I was about 13, and as nonbinary when I was about 17. Unusually, I think, I didn’t feel any internalised shame about my queer identity in the traditional sense. When I realised I was bisexual, I was excited about it: excited about my newfound connection to the LGBTQ+ community, excited about the possibility of kissing girls and excited that I’d found a label that fit me, after a year or two of worrying that I was simply a lesbian who was very bad at lesbianing.

When I came out to myself as nonbinary, I felt a degree of anxiety that I wasn’t not-cis enough (I didn’t experience all the dysphoria that mainstream media promised me, and I’d only put the pieces together as a young adult), but mostly I was, again, excited to find a word that fit my experience of gender. I understood, in theory, that a lot of people needed the Pride movement to allay their feelings of internalised shame, fear and grossness about being anything other than cishet, but whether it was the autism or my mum’s accepting and loving influence, I never felt bad about being queer.

This didn’t mean that I was uninterested in Pride events, but I didn’t feel any desperate pull towards them. I could experience the joy of being part of the LGBTQ+ community online, in the comfort of my own home, and that felt like enough for me. The first time I went to Pride, it was for an unconventional reason: I was deeply, deeply depressed, and it was a reason to leave the house.

My hometown’s Pride event was, and still is, mercifully grassroots in nature, held in a spacious park and never too crowded. But this didn’t stop me from feeling overwhelmed, especially when I found that there was nowhere for me to sit down and rest my disabled little legs, and nothing was signposted, leading to me getting turned around and confused at least twice an hour. I loved spotting other people’s flags, starting conversations with people about their dogs or their outfits, and talking to the people who ran stalls relevant to my interests, but I left the event exhausted and overstimulated and had to spend at least a couple of days in bed or otherwise in my pajamas, recharging my limited energy.

Bigger Pride events, as you can imagine, intimidate me. I went to one in my university city and found it so challenging that I slipped away on more than one occasion to the outskirts of the event, taking deep breaths and chewing on free sweets obtained from various stalls and booths. I know lots of other people find Pride inaccessible, and this year, I stuck to my hometown’s event – but still needed to be babysat by my girlfriends and metamour, reminded to eat, and encouraged to leave earlier than most people might because I was ready to lie down on the grass and give up.

This is why I feel conflicted about Pride. I already felt like it might not be for me, since I didn’t experience the internalised shame that so many LGBTQ+ people talked about, and after having found so many Pride events to be lacking in the accessibility department, I felt that even more strongly. Couple that with a police presence which makes my autistic nerves run higher than the volume on the main stage’s speakers and the ongoing online discussions about who “belongs” at Pride, I’ve often wondered what Pride does have to offer me.

The thing is, Pride as a concept is great. I enjoy rainbow paraphernalia and I even enjoy watching corporations desperately try to cater to me (only to drop the facade on the 1st of July) and then watching other LGBTQ+ people mock them for it. Pride month is fun, it reminds me of the importance of community and visibility, and it gives me an excuse to respond melodramatically to every minor inconvenience (“It’s raining? During this, Pride Month?”). But I’m starting to acknowledge that I pressure myself into attending events that I don’t really need to be at. I already know my community exists, I have created safe spaces of my own to be queer in, and I don’t feel gross or ashamed or anything other than pleased about my queer identity.

I know Pride does a lot for a lot of people. I love seeing people at Pride events blossoming with confidence they might not feel anywhere else, and I appreciate that there exists a space where everyone can just… be their authentic selves, without fear of repercussion. But with gatekeeping, corporate involvement, inaccessibility and the rest of it, it’s a movement and a series of events that I feel somewhat disconnected from.

I will continue to defend my LGBTQ+ siblings’ right to attend Pride events, obviously. I want to speak up in defense of asexual and aromantic people’s place at Pride and about the ways that a police presence can make POC and neurodivergent people feel deeply uncomfortable, but I might not need to push myself into events to achieve that. I suppose it’s a result of internalised ableism, something I do experience a lot of, that I feel like I need to do what my abled friends are doing whether I actually want to or not. And I suppose it’s important for me as an activist to confront my internalised ableism, and that might mean staying home from crowded, noisy, police-infested Pride events when I need to.

I’m still going to buy shit with rainbows on it, though. I’m always going to buy shit with rainbows on.