A Disabled Person Reviews: Sickness & Lies (BBC)

Screenshot of BBC's title, Sickness and Lies, but above it I added text so it now reads "A Disabled Person Reviews: Sickness & Lies"

Note: this documentary is not good, and if you’re disabled you might find it very upsetting. You might also find this review upsetting as a result, so feel free to skip it if you need to.


It has taken me a week to watch a 25-minute video.
Obviously, some of the reason for that is the cognitive fog that comes of holding an alphabet soup of mental health diagnoses, and that I’m supposed to be writing a dissertation. But most of the reason it took me a while is because, friends, this one hurt.
The disabled community is not unfamiliar with being mocked and/or dissected in mainstream media, having their diagnoses doubted and generally being treated like shit, within documentaries and outside of them. I was expecting this to be bad, so it’s not that I was disappointed. It was an extremely angry kind of hurt.
The first thing I saw about this documentary was Jessica Kellgren-Fozard’s Tweet about it, stating that she firmly declined to take part in the project because she disagreed with the premise. I’ve followed Jessica’s career for a number of years now and I respect and trust her as a content creator, meaning that I also trust that what she has said is true. So yes, I started from an angry place in watching this doc, but only because I knew that footage of Jessica Kellgren-Fozard had been used without her permission. I hoped, though, that this little sprinkle of unethical journalism would be an exception, not the rule.
The premise of this documentary, apparently, is to investigate the recent phenomenon of “Munchausen’s by Internet” (which, I would like to note, was invented by a white man). Essentially, Munchausen’s by Internet is a factitious disorder linked to and driven by online interactions with other people, and I personally (as someone with, admittedly, zero qualifications on the matter) don’t think it’s a real thing. It’s my opinion that yes, some factitious disorders are probably made worse by unregulated internet access, but the vast, vast majority of these people are legitimately disabled, enjoying community and acceptance for possibly the first time and eager to share in a space where that’s welcomed. Regardless, the documentary also looks at people trying to diagnose others with MBI or otherwise trying to prove that they are not, in fact, disabled.
Sounds like fun, right?
Infuriatingly, the documentary provides no numbers about most of these things. We’re informed that “many of the accusers are people with chronic illnesses themselves,” but there’s no clarification as to an exact number or proportion. They have no stats on how often people are malingering (which, I should note, then also makes them ill as someone suffering from a factitious disorder or similar), nor on how often disabled people are harassed about it. They don’t present any data about disabled people’s internet usage or about their wellbeing as it relates to internet usage; it’s all interviews and broad statements. One statement that was absent of numbers but caught my attention was when the online chronic illness community was described as having “spiralled” in recent years. Not “grown”, not “exploded”, but “spiralled”, because obviously the expansion of our community is a negative. They also draw attention to the fact that the number of chronically ill people is growing, especially among young women, to which I say two things: 1. Your data only shows you the growing number of diagnoses, which could be due to a huge range of factors including more comprehensive healthcare access, changes in the diagnostic criteria of certain disorders, etc., etc., and 2. Young women are one of the most thoroughly silenced groups out there. If the number of diagnosed-disabled young women is growing, could it be possible that it’s because cultural shifts have allowed them to be diagnosed? And could it also be possible that a supportive and informative online community is helping with that? Of course, they don’t dwell on any of this, because they’re too busy panicking about how many disabled Instagram users there are nowadays.
I tried to draw hope from the fact that the presenter of the program is also disabled, but a cynical voice kept asking me whether, perhaps, the BBC had chosen a disabled presenter to mitigate the obvious yuckiness of the program’s premise. She expressed that she began making the program as a result of falling down an online “rabbit hole” about chronically ill people, and the people who accuse them of faking.
Allow me to stop everything right there. I’m doing a Linguistics MA. I spend a lot of time investigating the way people frame things, what they bring to the foreground and what they do not. I noticed almost immediately that, wherever possible, the term “chronically ill” was being used instead of “disabled”. I’m not sure why, but I have two theories: the optimistic one is that this is because the BBC knew that not everyone identifies with or wants to use the label “disabled”; the cynical one is that they didn’t want to emphasise disability, because disabled people are, in the UK, a minority group protected by law (specifically, the 2010 Equality Act) and even if this documentary doesn’t constitute a hate crime, acknowledging that you’re closely dissecting the disabled community might make you sound like more of a prick than if you say “chronically ill”. (This documentary does a lot of work to avoid seeming prickish. None of it is successful.)
Then there’s the online bit. Yes, these are predominantly online communities that are being examined, both of ill people and of their doubters, but there was no discussion of disabled people forming community IRL, and, more annoyingly still, the discussion about backlash and suspicion was almost entirely focused on Reddit. A lot of people who watch this documentary might be inclined to think, “Ah, yeah, but Reddit is full of know-it-alls, argumentative bastards and people who are just generally cunts, so I don’t imagine this happens anywhere else online, and ill people can just click away from Reddit if they’re upset,” which wouldn’t be unreasonable. Unfortunately, this kind of thing happens on every platform I’ve ever used – Tumblr, YouTube, Twitter, Facebook, Instagram… they all have some lurkers who are hoping you’ll “disprove” your own disability. This behaviour is oppressive and inescapable, it is directed at members of our community within our own online community spaces, and, as even the documentary highlights, it can lead to real-life harm.
The trouble is that the documentary suggests that the harm that comes to ill people most often is self-inflicted as a result of trying to “prove” the existence of one’s disabilities; it shows interviewees recounting their experiences with coordinated harassment and doxxing, but then immediately returns to the topic of people intentionally making their symptoms worse or inventing new ones. One influencer makes reference to people who “list off every single diagnosis, or sometimes even their medications” (emphasis mine), her tone suggesting that this is a psychologically unhealthy behaviour that is driven by a need to disprove Redditors and their ableist friends. It’s my experience that when people list their conditions and/or medications, at least part of their reasoning is that someone else with that same condition, or using that same medication, can spot that someone is willing to talk about those things and can ask questions, compare experiences and receive encouragement. Again, yes, I do imagine that there are some people with actual factitious disorders who should maybe avoid that kind of content for their own sake, but I also imagine that they’re a very, very small minority.
This was another bit of framing that frustrated me. Consistently, throughout this doc, behaviours like posting symptom lists, lists of diagnoses, photos related to medical care, etc., have all been treated as though they are done solely for the purposes of proving yourself to be ill. They did mention, sort of, that the disabled community can be quite supportive and caring, but they didn’t consider for a moment that the things disabled people post are for the sake of other disabled people, rather than for the abled audience trying to expose them as liars. There was no use of the word “destigmatise” even though that seems like a pretty high priority for many disabled people, especially people with more “gross” disabilities like those related to digestion, or diagnoses which make you behave differently from your neurotypical peers. Wanting to destigmatise the specifics of disability, one’s healthcare journey, bodies that look different from what’s typical and the difficulties associated with being disabled is certainly the reason I post about mine, and it seems to me to be the main reason people share this information, for a disabled audience, an abled audience or both.
Lots of things, actually, that could look like signs of Munchausen’s By Internet to an outsider are actually very typical parts of being disabled. Someone mentioned illnesses “piling up” as though that ought to raise suspicion, when in reality, 1. Lots of conditions are comorbid with one another, so plenty of people have multiple and/or changing diagnoses and 2. Once you’re under the care of a certain healthcare team or similar and you’ve been diagnosed with one thing, it’s way more likely you’ll be tested for or could raise concerns about other things. Dr. Dickhead, who coined the term Munchausen’s By Internet, also lists “miraculous recoveries” as a sign of MBI, which frustrates me since “miraculous” can be so subjective, and sometimes bodies really do just glitch badly and then figure themselves out. Moreover, it highlights “clones” who apparently imitate disabled people so closely that “they get the same chair, the same colour service dog”, but listen. Wheelchairs are very expensive, and I personally wouldn’t want to choose one without checking out the opinions of people who already own one. Service dogs, whilst being very very good boys and girls, do not come in a huge range of colours to begin with, so statistically you’re pretty likely to see two people with a service dog of the same colour (you tit). The whole documentary feels like, regardless of its host, it has been put through a very particular lens that just cannot capture the nuances of being disabled, let alone being disabled online, because that diverts from the bit where disabled people are naughty lazy fakers. (It also feels like this should have been an hour long, partly for this reason and partly just based on the choppiness and the half-arsed interviews that answered like two questions.)
The investigation into the actual twats doxxing people for being disabled wrong was, in my view, less prominent than the discussion on faking/MBI itself, but it was also very “both-sidesy”, interviewing a moderator for one of the subs where doubters cluster together to try and find signs of faking, and finding that she considered it “a failed experiment” rather than something that could cause actual harm. Quite tellingly, she also said, “Sometimes we forgot we were dealing with human beings,” and acknowledged that “there is a line” but neglected to define where it might be. It seems like parts of the documentary are defending others’ right to scepticism, which, y’know, whatever, but that also means they’re implicitly defending behaviours that make others’ scepticism the problem of disabled people. Public internet forums debating whether or not you’re actually ill will always be hurtful, and sometimes dangerous (I convince myself I’m not disabled on a near-daily basis anyway; I don’t need any encouragement to stop taking my antipsychotics).
The thing is, this documentary does not exist in a vacuum. It exists in a world where we know that chronic conditions are underdiagnosed, especially among minority groups like women, POC, LGBT+ people etc., and it will be viewed by the people who have the power to provide or withhold these diagnoses and the treatment one could subsequently receive. It will be viewed by nosy and ableist next-door neighbours who will make you feel unsafe claiming benefits in your own home in case they glimpsed you in the garden last week. It exists in a world where the disbelieving of disabled people is already causing suffering and deaths, so maybe it’s clear why I’m angry about this documentary, which suggests that disabled people should be disbelieved.
I’m angry that they used Jessica’s image without her permission. I’m angry that they then said that “big-name influencers” like her had declined to be part of the documentary “because they’re afraid of being targets”, when Jessica states clearly on her Twitter that her motivation for declining was the ethical implications of the premise, and I suspect that was the case for many of these “big-name influencers”. Mostly, though, I’m angry that this exists. I’m angry that this was made and aired, and that whoever made those decisions either didn’t care, or didn’t care to learn, how it might affect IRL disabled people. I feel betrayed that the host was disabled but didn’t seem to bring any nuance to the table regarding disability, and was clearly there to portray “both sides”, not to advocate for other disabled people. I’m angry that it was weirdly short, so it gave only a very brief overview of campaigns of organised harassment, which are both fascinating to me as a linguist and terrifying to me as a disabled queer. I’m angry that most of the people featured in this doc were white, and that the focus was so heavily on physical disability, and a whole bunch of other things. And I’m hurt, because I feel like actual humans chose views and ratings over my actual wellbeing.
The documentary did a couple of things I didn’t hate, though! The host used they/them pronouns for a nonbinary interviewee, instead of misgendering them or carefully avoiding using any pronouns at all. She also did acknowledge that disabilities and medical interventions affect everyone differently, and what might hold true for her is not necessarily true for others. I liked some of the cool projection effects they used.
…that’s about it.
So, should you watch this wildly irresponsible and/or directly malicious documentary? Honestly, if you’re disabled, I wouldn’t recommend it – you won’t learn anything new, you’ll just be reminded how many people think you’re a liar and just how unsafe disabled people are in the world. If you’re not disabled, it might be worth watching just to know what discourse is floating around about disabled people, so that you’re positioned to be a better ally and advocate… but really, it’s not even terribly interesting, so maybe you’re better off reading reviews of it (like this one! But read multiple! I don’t represent every single disabled person!) and not giving the BBC the views. I can only really recommend it to people who, like me, sometimes want or need to get recreationally angry at the TV and who can’t find anything more infuriating on iPlayer.
I’m not here to tell you what to do, but if you want to complain about any aspect of this documentary, you can get in touch with the BBC by clicking here. If you want to support your local angry disabled person, you can buy me a coffee through Ko-Fi here. If you’d like to see some calming pictures of kittens, click here.

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.”

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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