Pain acceptance needs more than individuals

Vox’s Impact podcast has recently released an episode on “Pain AcceptanceVox has written upon before, and I generally respect their approach to such things. This article from The Conversation is also a good summary of the background. It’s important to remember that I’m coming from a couple of different angles here – firstly, I’m in the UK, so my experience of healthcare is going to be different from that of people in the US – not necessarily wholly better in every way, but certainly different. Secondly, I live with chronic pain, and have done for nearly ten years now. I take a daily SNRI and, occasionally, a non-opioid anti-inflammatory painkiller; I also try to swim and walk regularly. The list of treatments I have tried that haven’t helped is much, much longer – and includes Graded Exercise Therapy, and have had plenty of experience with less-than-awesome care because of my disability. Thirdly, I research chronic pain as a sociologist and a critical disability academic. This doesn’t make my position unique, but it does give me a definite bias.

I really recommend listening to the podcast if you can (it’s a pity there’s no transcript – and while I appreciate this pushes the cost of making podcasts up, as well as seeming against the point, it does mean it is inaccessible for hearing impaired and D/deaf people), but in summary: health policy journalist Sarah Kliff interviews several people to talk about managing chronic pain – two people with chronic pain, one who uses opiates and wants to continue doing so, and one who has used opiates in the past and has been able to switch to non-opiate ‘acceptance’ management. She also talks to Jane Ballantyne, president of an organisation called Physicians for Responsible Opioid Prescribing, who has written and spoken previously about the need to explore non- and low-opioid chronic pain management. Kliff also talks about her own experience with chronic pain, which I appreciated.

In brief – “pain acceptance” is pain management that is closer to what lots of people in the UK will probably be pushed towards, without the ‘acceptance’ part – and indeed what I have experienced, in part. It is the use of non-opioid medications, along with chronic pain-specific mindfulness meditation, cognitive behavioural therapy (CBT), and physiotherapy – and possibly other approaches, from hydrotherapy to acupuncture. Pain acceptance also makes a point of asking people living with chronic pain to accept lower pain, or managed pain, rather than no pain – and looks at how to live a good life with chronic pain.

When it comes to how we think about medical care, zero pain is assumed to be the target – it is the assumption a doctor makes about what their patient wants, and the assumption that the patient makes about what their doctor can do. And zero pain is also what people living with chronic pain generally want – especially at first. And it’s a perfectly reasonable thing to want, because being in pain is rubbish. However, it is not always a possible thing, and as Kliff and one of her interviewees point out, this is not always addressed from the outset. Instead, each new treatment is presented as “this one will be the cure” – partly because doctors don’t want to be seen as fallible (Sarah Wendell talks about the ‘hero complex’ of doctors in The Rejected Body) and they do want their patient to give this one a go. Unfortunately, this has the side-effect of hope, and it’s the hope that makes things so awful when the new treatment doesn’t produce zero pain – it might lower the pain a little, or a lot, or it might not do anything except introduce some new weird side effect, but when you’ve been promised and hoping for zero pain, anything except zero pain is a crushing disappointment. And then you have to pick yourself up and start again.

What the podcast missed out, for me, is exploring why people get suckered into that hope – and why doctors find pain acceptance/management such a difficult thing to discuss (especially if those doctors are not chronic pain specialists). And why people find the idea of pain acceptance so hard – even those who live with chronic pain.

My thinking – and what my research has been about – is that it is to do with ableism, and how pain is conceived of in everyday life. Bear with me, because I’m going to say some things that might not sit well with you at first. Pain is positioned in wider anglo-american   culture – with differences specific to specific places and people – as a whacking great negative. People are supposed to not be in pain – normal people aren’t in pain. I use ‘normal’ to mean both normal, as in norm-core average, but also as in the ideal, as in supposed to and should be. A lot of normal is hard to spot, because it is the ideal – it doesn’t stand out as different because our cultural discourses tell us that that’s how it should be. We don’t notice women wearing skirts because that’s a normal thing for a woman to do, we don’t notice not being in pain because that’s normal.

But more than that, the normal-ideal means that we shouldn’t want to be in pain – the cultural discourse is that pain = bad. There are exceptions here (childbirth, for example, but also getting a tattoo), but they don’t deny the core of pain-is-bad, just twist it to say pain-is-bad-but-necessary-for-this-one-thing. We don’t like seeing other people in pain (or talking about it) – and there are various theories about why this is, including something called mirror neurones in the brain which may or may not have to do with empathy and learning – but it also comes down to pain = bad. Pain is out of place, and like any other matter out of place, it is gross and weird and we don’t like it and could it please just go away now before I get it on my nice normal pain-free self. I’m over-simplfying a bit, but other people’s pain is like cooties.

Fiona Kumari Campbell, when writing about disability and ableism more broadly, calls this reaction ontological impossibility – in being confronted with disability, we turn away, horrified on a very visceral level, because we are being forced to imagine not-normal as possible and we just literally can’t even. The discourse of normal is really strong and it takes a sustained effort to see it and break it, and we have to break it every time when we come face to face with difference – even when we are already different ourselves.

And this is why zero pain has such a strong sway over us.

It isn’t just that, though. We have also managed to fuck ourselves up somehow to acquire a discourse of risk and blame around illness and disability – we assume that someone is sick or disabled because they have somehow failed to mitigate risk, or look after themselves properly (or their parents failed). When it comes to being in pain, we’re still in pain because we’ve failed to try this cure, or the next, or the next, or the next, or the next. We can’t really have tried everything because if we had, and we’d really tried and thought positively and just tried a bit more, something would have worked and we wouldn’t have been in pain – which we wouldn’t have been in if we’d just done it right in the first place. Have you tried yoga?

This means that accepting pain is really hard, because you’re not just accepting pain – you’re accepting failure, that you are a failure and your doctor is a failure. That’s a really strong thing to deal with – and really difficult to do, especially after you’ve had years of being told to try one more thing. It’s even worse if you’ve found something that is helping with the very worst (or at least making it possible to do some things), and you’re being told that you need to stop now – and your choices are: keep taking opioids and be an addict-failure, or stop and be a failure because you’re in pain. It’s not much of a choice.

There needs to be more discussion of the bind we put people living with chronic pain in. We need to talk more about how pain acceptance isn’t just one person going “I am going to be ok with this,” is is everyone else, and wider culture, going “We are ok with you as you are.” Pain acceptance – pain management – needs to be framed as the initial approach, even before a diagnosis is found.

And pain management needs to be accessible to everyone. It needs to be affordable – even free (let’s not even start me on health insurance, but needless to say, it should all be covered). It needs to not have long waiting lists, or for people to be excluded from trying something (if they want to try it, because they shouldn’t have to) because they live in a particular area, or they have another disability, or they have already had five sessions of hydrotherapy and that’s your lot. Pain management is about more than an individual patient and a doctor – it’s about a cultural shift.

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Post-viva flump

I had been planning to write this for Blogging Against Disablism Day – which is the 1st of May each year – but, well, this is not the greatest of weeks for me. That said: you should definitely go and check out the posts. I have been working my way through them, and really enjoyed Goldfish’s Six ways disablism makes it harder to live with chronic pain;  Disability Thoughts on Dispelling ADHD Misconceptionsand The Autistic Ambivert on Ableism with Disability Services – the latter two have been really helpful in thinking through some of my teaching stuff. In addition to BADD17, you should take a look at Crip The Vote UK – on medium and Facebook.

Right. On with the blog. I had my viva examination at the end of March, and it went well, and other than some minor corrections, I am now a Dr. It doesn’t seem quite real, and, frankly, the comedown has been fucking awful. I have depression anyway – it’s something I’ve lived with for the best part of at least twelve years – but this is one of the worst spells I’ve had in a while.

There is a lot of talk (and very little doing) about mental health and PhD students – and academics in general – although this talk tends to assume that the PhD is the first time the person has experienced depression, or that the depressed person is otherwise/previously healthy and non-disabled. This talk is not followed by systemic change, although lots of people have pointed out that mental health is complicated and made worse by the bloody awful systems we are living and working under; cuts to mental health services and increasing workplace precarity and pressures combine to make everything worse – and that doesn’t even start to mention the pressure of doing a PhD for individuals. But there is not much talk of the effect of finishing a PhD on mental health – although some talk on twitter has led me to understand that even when the exam is successful, there is a period of lowness; Pat Thomson’s Patter blog on the post PhD slump is an excellent overview.

But.

But. In the immediate aftermath of my viva, the stress and energy output combined to result in an inevitable massive flare – one that I haven’t fully recovered from, given that I’ve also been attending conferences, invigilating, marking exams, teaching, and hosting people coming to stay. This hasn’t helped my mental state one iota, but has at least given me something to do, in addition to the corrections. For me, the problem is less about not having anything to do. but about having too much to do, not enough rest, and not enough time or energy to do the things I actually enjoy doing. I am exhausted – and thus while I am aware of all the various tasks I need to get on with (updating my publication planner; postdoc and job applications; writing papers; corrections; screaming into the void) I have very little interest in getting on with those tasks. I’m barely managing to get through the admin for work and other life stuff (the impeccably timed laptop death, going to the dentist and the optician, cooking, laundry), and this just seems like too bloody much.

At the same time, I feel I shouldn’t stop – I feel that if I stop now, if I take a break, I will lose momentum and also time from the critical post-PhD getting-a-real-academic job period. I don’t have a postdoc lined up – I don’t even know if my current job will still be here in October, thanks to (among other things) the ongoing drive to limit the amount of international student visas. It is … really not a great time.

I don’t have any helpful hints at this stage. My current approach is to keep plugging along, in the hope that I’ll come across a break soon (if nothing else, I’ll stop teaching at the end of the month, until July) – and that I’ll run out of crises to deal with. I am hoping that the stress will die down with teaching coming to an end, which while it won’t help with the long-term, will help with the short-term overwhelmed feeling.

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Real World Academics

My grandfather used to call academics ‘eternal students,’ because he didn’t really see the point of academics. He saw them as these posh, rarefied beasts in an ivory tower, who didn’t come down to his level and do a proper day’s work – they dossed about and got up late and couldn’t put up a shelf and appeared on University Challenge. He didn’t see them as having any respect for him – a man who’d worked on a farm, then joined the Army, then worked as a salesman and security guard, a man who’d left school at 12 and hadn’t seen the point of it when he had been there. My grandfather was a good man, and a working class man, but he didn’t really see the point of knowledge unless it had a practical purpose, unless it came from a place of work and care and pride.

I say used to because he changed his mind when I went to university. Not immediately, it wasn’t a sudden Damascene conversion – he was too stubborn for that – and it took a lot of arguments and talking. I was the first person in my family to go to university (not the only one, my brother followed three years later) and by that time my grandfather saw getting a degree as necessary, but not really any practical use. He had ambitions for his daughter and grandchildren, the same ambitions my grandmother has, that my brother and I be educated, knowledgeable, practical people, who would have jobs we took pride in and opportunities he didn’t have – and if we had to go to university first, so be it.

My grandfather tried to understand some of what I was doing – and I’ll admit I didn’t always tell him about all of it, because some of it did sound like bollocks even when it wasn’t – and whenever I’d explain he’d ask “what’s the point of that, then?”  I always felt defensive, because his approval was important, and also I wanted him to see why it was important. It was fairly easy with some of the physical geography stuff – he’d been a mountain climber and a sailor, he loved nature and anything that grew – but the human geography and sociology was harder. And sometimes, to wind him up (I am my mother’s daughter) I would tell him “because it’s interesting.” At which point either my grandmother or my mother would intervene because nobody had entirely forgotten the time he wouldn’t speak to me for days after I told him that he should read Windows for Dummies (a book, to help with his computer skills) and he thought I was calling him stupid and that word was the number one cardinal sin in his eyes.

Sometimes, however, because it’s interesting would lead to better conversations, because if I took the time to tell him why it was interesting, and how it did fit in with the wider world – and usually when my grandmother prompted how it might be politically interesting or at the very least help solve a crossword – then we would talk. And slowly he stopped referring to me as an eternal student like it was a bad thing, and started acknowledging that we did need people to look closely at things that don’t always look important straight away, and we need people who know a lot about one particular thing, whether it’s engineering or disability or astrophysics or 17th century poetry. He stopped dismissing academics or experts and started talking about ‘people like you’ and nodding at me. There was a sort of pride there.

Which is all a rather long-winded way of saying why Glyn Davies’s two tweets yesterday, in which he wrote “Nothing more irritating than academics rubbishing the efforts of those operating at the sharp end, without facing up to the hard decisions.” [and] “Personally, never thought of academics as ‘experts’. No experience of the real world” were so very, very infuriating. I can see where the attitude comes from – Davies left school at 16, the same age as my father did, worked on a farm like my grandfather, and while he did go to university as a mature student in his 50s, he strikes me as a the sort of man who sees himself as practical, a ‘common-sense’ thinker. I disagree with his politics – he’s a Tory, and a Leave voter, for starters – but a read of his blog shows a man who cares about his constituency and doesn’t make snap decisions. Even if I think his decisions and opinions are totally wrong.

Apart from the bit where academics are experts – by dint of knowing a lot about a very specific thing, and thus having very specific expertise – Davies is wrong about academics not having experience of the real world. If nothing else, academics are not robots, they are people with families and friends, who pay rent or mortgages and do the supermarket shop and tweet about Strictly on a Saturday night and get drunk in pubs and start ranting about their pet hate.

Academics also think carefully about the impact of their work. They care. They might not work with their hands all the time – and the artificial divide between “mentally” and “physically” taxing work is another thing I will get to – but they do the work they do because they see value in it, and not just the value of knowledge in and for knowledge itself. They do the work they do because they want to make the world better, or because they want to make a change in the way the world works or is understood or how we see each other.

One of the reasons my grandfather looked down on academics is because he didn’t see their work as difficult, as labour-intensive. He valued physical work – for him, working hard meant work that left you tired, made you sweat or hurt. It took a lot for him to see my work – and before that, being a student – as work. In a lot of ways, it took more to recognise my work as work than it did for him to see how academic expertise could be important.  And we do devalue work that doesn’t strike us as immediately physical, especially physical in a masculine sense, in that care and cleaning work is devalued not because is it not physical (it is very physical), but because it is physical work associated with women, with feminine roles. We devalue service work because it is emotional labour; call centre work involves a lot of sitting and talking, but less heavy lifting, and while shop work involves a degree of heavy lifting, it also involves a lot of talking with people, of being polite to people and showing an interest in them. And as teaching has emphasised people skills – managing a classroom – as transferring knowledge, it has become perceived of as emotional, and thus feminised, and devalued.

Davies’ tweets devalue emotional and non-masculine physical labour. They devalue academic knowledge in particular, by painting it as not ‘real’ – not physical, not practical. He implies that academic knowledge is not real expertise because it has not come from masculine physical labour. He implies that careful thought – which drives innovation and change – is somehow not worth anything, can be ignored. That attitude is a part of the systemic devaluation of academic work that has fed into the cuts to humanities research and teaching, the loss of ‘soft’ A-levels such as Archeology and Art History, and the growth of casual teaching contracts. That is why they annoyed me, not just the implication that by being a massive nerd I’m not also aware of the rest of the non-massive-nerd world.

And I like to think that my grandfather would have appreciated that, and would have joined me in grumbling about people who don’t realise when they’re talking rubbish.

 

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Crip(pl)ing Pain – Poster Presentation at Encountering Pain

At the end of last week, I went to the Encountering Pain conference at UCL. The conference was really good – it was very much an interdisciplinary conference, so there were people from a range of academic disciplines, as well as artists and medics. One of the starting points of the conference was the work of Deborah Padfield – particularly the pain cards she co-created alongside people living with chronic pain who were also undergoing medical care for their pain; I really recommend looking at Deborah’s work – and attendees also heard from project participants, which was really interesting.

I was asked to prepare a poster – not my strength at all, unless it involves felt tips – on the topic of crip and pain, hence the title. I probably spend too much time trying to be witty with titles. My poster was a very short account of how crip theory can be used to expose some of the problems with chronic pain. You can look at a pdf version of the poster (which was also the flyer version), and a word version if that’s more your thing (especially if you’d rather not deal with images and layout).

I’m going to try and explain what I mean by the problems with chronic pain. I am also going to try and not use complicated academic language like I did on the poster. Please tell me if I am not explaining my ideas very well.

So, to start with – crip theory puts forward this idea that modern society (at least society in the UK, but also in the US and other similarly set-up places) sees “normal” as the ideal – so everybody should want to be “normal” and society is set up so that “normal” people benefit from it. Some people are not normal because they are disabled, or gay, or not white, or old, but society also thinks those not-normal people should be trying to become normal, because being normal is the best way to be. In academic words, this is called “compulsory able-bodiedness”.

Pain means lots of things in modern society, and pain is both normal and not-normal (in the same way a white gay man is also normal and not-normal). I think there are five big ways that pain is related to the idea of normal.

One: it is normal to feel pain. There are some people who do not have certain genes, which means that they cannot feel physical pain. This is considered a serious disability, and it does make certain parts of those people’s lives very difficult. This is because pain is very useful to us when it tells us our bodies are doing something dangerous, like touching a hot cooking pan, or that we are sick.

Two: normal people are able to talk about their pain, and tell other people when they feel pain, and why they feel pain. If I bang my toe on a step, if I am a normal person, I need to be able to say “ow. I have just banged my toe on the step and so my toe hurts.” Sometimes we need the help of other people with special training to help us understand why we feel pain – these people are doctors.

Three: pain only has meaning in relation to other things. This is a little bit complicated, but: I banged my toe on the step and now my toe hurts. The pain itself is only important because I banged my toe and because I tripped. If I have a headache, the pain is only important because it can tell me or the doctor that there is a problem. Pain on its own does not have meaning. This is why chronic pain is such a big problem in this society that wants everyone to be normal – because it is not telling us or doctors anything, it does not tell me anything about the world, and it is not caused by anything. It is just pain.

Four: pain is bad, even when it is normal. Nobody is supposed to like having a headache, or falling over. Normal people should try to stop feeling pain, usually by stopping what they are doing, and sometimes by taking medicine. When people are in pain they are not good at being normal – and because we are supposed to want to be normal, we are supposed to want to stop pain.

Five: we do not try to feel pain. This is joined to number four – pain is bad, normal people want to stop their pain, and normal people also do not want to do anything that will make them be in pain. If we are doing something that makes us feel pain, the pain is still bad – and these things are only acceptable because the result is good: when we do a lot of exercise, and when people give birth to babies. People who like to feel pain, or who do things even though they will feel pain, are not normal people.

I think this is a really important thing to consider, because pain is very important in medicine and also in disability, because almost everybody feels pain at some point in their lives. Even people who do not feel pain in their bodies feel painful emotions (and sometimes it is hard to tell what is a painful emotion and what is a painful sensation – it is not always helpful to split them into two things).

***

So, back to the conference. It was really interesting to hear so many perspectives on pain, and about all the ways people interact with pain. Rita Charon’s talk on narrative medicine was really good, particularly when she talked about the need to practice social justice with medicine (although I got the feeling this made some people in the audience uncomfortable – possibly because we think of medicine as this very neutral thing). One of the things I did notice was that people didn’t really mention disability much – and there was no suggestion that chronic pain could be considered alongside disability, or as a part of disability. I think this is partly because disability rights and disability theory hasn’t always been comfortable about including people living with chronic pain, or talking about pain more generally – but more so because a lot of the thinking about chronic pain was very based in medical diagnosis, so people were separated out based on what diagnosis they had. So while we could talk about trigeminal neuralgia and M.E./C.F.S at the same time, as both are chronic pain diagnoses, there wasn’t space to talk about M.E./C.F.S. and autism, or fibromyalgia and Downs Syndrome in the same space. For me, this was really disappointing, as I thought that a lot of the ideas people were explaining, particularly when it came to problems with doctors and patients, could really have benefitted from some disability theory reading.

There was also division between medics and people living with chronic pain – even though there was some acknowledgement that people living with chronic pain could be experts, they were never expert medics. Expert art therapists, or artists, or writers, or even expert patients – but not medics. There was some discussion of empathy, and of doctors’ hero complex (where doctors don’t like to lose and don’t like to be wrong), and even of the problem of this word normal creating artificial divisions. I really, really think some consideration of the ideas of compulsory able-bodiedness, of medicine as a system of knowledge and power, and of ontological intolerability would really have helped. I know these aren’t necessarily considered suitable topics for events that want to be engaged with the public, and they are definitely uncomfortable topics in medical spaces, but my one disappointment was that there was so little space to speak back to medicine, to challenge it directly.

Otherwise it was a fabulous event, really interesting and engaging – and with some great dance from Anusha Subramanyam. I really recommend looking back through the tweets at #encounteringpain and exploring the various images and texts linked to there. Sue Main’s work at Exhibiting Pain is definitely worth a look (and a comment) – as is this essay from GP Jonathon Tomlinson (which contains some great links at the end). Huge thanks to Deborah and her team for organising (and Deborah more personally, for the encouragement and talking me in to doing it when I panic-quit).

 

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#BADD2016 – On Pain (of course) and the Personal

This post is for Blogging Against Disablism Day 2016. You should go read the rest of the blogs and check the hashtag #BADD2016 on Twitter. Massive thanks, as always, to Goldfish for organising this.

When I tell people about the subject of my PhD, they frequently look at me like I’ve gone round the proverbial bend for a few seconds. I can understand that – chronic pain isn’t exactly the cheeriest of subjects, and it doesn’t sound like there’s a lot of space for much to be done. Then, a lot of the time, something else happens: they assume I am looking to cure chronic pain or they look at my walking stick and ask “so, this is for personal reasons?”

I can, on some level, understand why. But whenever I talk to other PhD researchers, what quickly becomes apparent is that their research is always personal to them – but it is only “minorities” (i.e. disabled people, people of colour, LGBTQ+ people, or women) who are assumed to be doing their research about something personal, something integral to them. And there is a part of my research that is personal – I started to look at disability because I was settling into being comfortable with being disabled, but I found people like me weren’t reflected in what I was studying at the time (which happened to be gender and sexuality). I wanted to go and find a part of academia where I was included.

At the same time, my research wasn’t chosen because I live with chronic pain; it was chosen because when I was interviewing participants about their queer identity and acquired disability, BDSM and kink came up in two of the three interviews – and while that was probably just luck, it came just after I’d had a job working for a BDSM-friendly cafe, Coffee, Cake and Kink – now Coffee, Cake and Kisses, because finding somewhere willing to lease a store to them with the word kink in the title was impossible – where one of my responsibilities was helping to develop the company’s disability/accessibility policy as an employer and a venue, with the aim of making it an accessible space. This was (obviously) a few years ago, and it was very much at the “ideas first, practicalities later” stage – but it was interesting to note how many of my colleagues and our customers and people on the BDSM scene were interested in disability rights, were disabled, or had friends who were. Endless conversations were had, and then when kink came up in those interviews – it seemed to me like this was something that was not being talked about.

Pain is assumed to be a major part of BDSM (for those of you not familiar with the acronym, it stands for Bondage and Discipline, Domination and Submission, Sadism and Masochism – and no, I haven’t read 50 Shades, because I like my porn well-written, thank you) – and while it can be involved in some practices, it isn’t necessarily a foregone conclusion, and you can do kinky things without feeling pain – or causing another to. That said, there are lots of activities that can include playing with sensation – such as flogging, spanking, or needle play – or that might cause pain as a side-effect, such as some positions in bondage; others might include what could be thought of as emotional pain. There isn’t always a great deal of discussion of pain in BDSM – I think because pain has such a negative connotation, particularly with violence and suffering, that it is a difficult thing to really put centre-stage, especially when many people on the scene want to “normalise” BDSM, to remove the stigma of being kinky. So I was interested in what pain meant in that context, as well as in the context of disability. I admit, I went with pain because I have chronic pain – although I was also considering bondage in the context of reduced mobility – because it seemed like such a juxtaposition, but I’d spoken to enough people to know that there were people out there who liked playing with pain, who also lived with chronic pain. It might not have been what I was into, but it didn’t seem unreasonable.

So it was personal, but it also wasn’t. I don’t know if I’d have discovered the gap in academic writing if I hadn’t become disabled, but it isn’t a foregone conclusion. Not everyone who studies disability is disabled (although plenty seem to be – or have disabled family or friends), but not everyone who studies French literature is French – that it is assumed to be correlated is what annoys me. I’m not the first person to get annoyed by this – lots of feminist academics have written about the same issue with their work – but it is something I’m struggling with, separating myself from my writing when I also want to pull out my own experiences, when I have written about how my work affects my pain (simply put – it makes it worse, but also different) and centralised reflexive practices (a.k.a. navel-gazing) in my research methods. It is … difficult.

Which doesn’t mean I don’t wonder if people would stop assuming it’s personal if I wasn’t using a walking stick.

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Tortoise Containment

I’ve been working on an outside pen for Lady Thortoise since I got her at the end of last summer. The temperatures are nowhere near warm enough for her to go out – it’s definitely spring here, but it still gets nippy overnight – and the plan is that she’ll go out in the day and come back in at night for the moment, during nice days. That’ll hopefully give the plants time to get growing.Once it gets properly warm overnight (as in, mid-teens) and I’m more confident she’ll be safe in there, she’ll stay out overnight. Lady Thortoise is a 3-toed Box Turtle, and so southern England is just about ok for her in the summer – apparently they do quite well outside. And this will give her a bigger space than her indoor cage to stomp about in, as well as natural light. And an endless supply of slugs and snails and worms to snack on.

The pen itself is an 8ft by 4ft raised bed, lined with weed barrier fabric and paving slabs at the base (in case she goes digging), then with about 6-8″ of topsoil back on top. We have really heavy clay soil here – which has limited the type of plants I could put in, but I was aiming for something similar to her native environment (even though she’s probably captive bred and therefore wouldn’t know the Ozarks from a hole in the ground). So a few shrubs, lots of ground cover, and some grasses. There’s dogwood and various carex species, NZ flax, hosta and ferns, geraniums, ragged robin, violets, pansies, and some hardy succulents – and heuchera and hopefully mallow and fuschia. The idea is that there’s nothing in there that’ll hurt if she takes a bite out of it, some plants she can snack on, and plenty of places to hide. And at the same time, something attractive to look at for us humans – so probably more flowering shrubs and pretty leafy groundcover than she’d get in a properly recreated natural environment.

There’s a small, and shallow, pool at one end – with two sloping edges so she can climb in and out easily. When it’s full, there’s about 5″ of water at the deepest point. I’ve planted it up and hopefully the edges will be covered in greenery;
I might need to pick up a few more bits for this (especially as some of the plants didn’t take here)

Below is a picture of the pond – complete with flag iris in a planter. There’s lots of gravel at the edges, and some big stones to keep it all in shape. I have never dug a pond before, and I was pretty rubbish at it. You can also see a cold frame, and the slate for feeding – and the stump which will hopefully encourage creepy crawlies, give her something to scratch against, and maybe even get climbed on.

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The little cold frame recommended for tortoise pens here, in case it gets chilly; these are more traditionally used like mini greenhouses, so they’re quite warm inside. I’ve put softer soil in there – so she can dig in easily. It’s not the biggest space inside the frame, but hopefully it’ll be more of a temporary hide for chilly moments. That end of the pen gets the sun for the longest time – from sunrise through to about 4-5pm in the summer.

Here’s the cold frame – and the terracotta pot, which will be filled with sphagnum. The cold frame is raised on bricks, with a little tunnel to get in.

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Two more views below. The paving slabs on the left are both for access, and an attempt to restrain the iris monstrosity that you can just see. Steeve is in the background.

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And, to keep the dogs, and the local fox (Janice – she don’t give a fuck) out – and her ladyship in – the pen topper. This is a wire rabbit run, slightly smaller (by about 5cm all around) than the raised bed – I couldn’t find one that met the dimensions exactly – and it is pegged into the ground. I’m going to have a fiddle and see if I can’t make it extra-safe. I might also run some of that flowerbed edging around the sides if Lady Thortoise objects to the space she can’t get at.

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And here’s her ladyship herself:

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Devotees and Disability

Last week, BBC3 showed a documentary, Meet the Devotees (on youtube for non-UK types). I, of course, got excited, but I’ve held off watching it because I’ve been: a) on thesis-writing deadline lockdown; b) enjoying a fibro-flare and thus trying to rest. I’m really bad at resting, resting is boring, and so is being too tired to function. So I watched it. I’m going to talk about the programme itself shortly, but first, for those of you wondering what the bloody hell I’m on about, a brief guide:

What is a devotee?

Devotees are people who have a sexual fetish for disability, usually in that they desire a visibly disabled body, and they get turned on by the scenario of having sex (or some other form of erotic/eroticised contact) with a disabled person. Devotees can be of any gender, any sexuality, and they can have very specific fetishes, or more general ones. Some devotees are turned on by the accoutrements of disability, particularly the medical aspect – devoteeism sometimes overlaps with medical play.

What is a fetish?

In this context, a fetish is a sexual desire “in which gratification is linked to an abnormal degree to a particular object” (OED, 2016) – in other words, the object or act is needed for the person to achieve erotic pleasure. The other meaning of fetish is a superstitious object (so a voodoo doll might be more properly called a fetish doll). But to unpick fetishes for a moment – fetishes are only identified when either the object/act in particular is “abnormal” (e.g. shoes, restraint, catheters), or the degree of desire is “abnormal” – so, to be a little simplistic: Person thinks red high heels are sexy: normal; Person can only reach orgasm while wearing red high heels: abnormal. We categorise certain things as fetishes, but not others – Person can only reach orgasm when their genitals are touched: normal; Person can only reach orgasm when they’re tied down: abnormal.

This rather obviously leaves a bit of room for interpretation, but in general, fetishes are only identified as such if they involve objects (aside from sex toys) or particular bodies that are already identified as abnormal. When I say bodies that are already identified as abnormal, I mean fat people or disabled people – or, arguably, children, but I want to put paedophilia in it’s own little box marked “no” for this blog, along with bestiality and zoophilia, because non-consensual sex is a whole other thing in so very many ways. The abnormal bodies I’m talking about are ones that people are not “supposed” to find sexy, or are supposed to be asexual.

So, back to devotees

In case you were wondering – this doesn’t mean that anyone who has a sexual relationship with a disabled person is a devotee. Devotees tend to be seen as “weird,” for a variety of reasons. First: they are sexually attracted to “abnormal bodies”. Second: they have assigned a sexual meaning to something that “most people” would see as asexual – a body part, object, need, or behaviour that is associated with disability, which is seen as asexual. If the devotee’s fetish is associated with caring, needs, or struggle – then this quite often comes into a third area; they are sexually attracted to bodies that are seen as infantile – bodies that need care, bodies that need other bodies to help them, or bodies that can’t do certain things. Then, finally, we have the fact that devotees are tarred with the label of “kinky” – they’re in the area of non-normative sexualities..

From the point of view of disabled people (although: not all disabled people), devotees are problematic for other reasons; firstly, because they are objectifying a person, and that can be uncomfortable for lots of reasons. Ableism already objectifies disabled people, turning them into objects of pity or care; on top of that, most fetishes are associated with objects (e.g. shoes) – and nobody wants to be a thing. This objectification can lead to the second reason: some devotees not being overly concerned about consent – in that if they haven’t declared they’re getting off on a body part, or a behaviour, and asked if you’re ok with that – and that’s not ok. This is obviously exacerbated by rape culture (which situates all objects of desire as being willing because they are desirable), and by ableism, which says that disabled people are either objects (and therefore incapable of consenting anyway), or unattractive and therefore so desperate for sexual attention that they’ll take whatever. Then, of course, there is the issue where a person is turned on by something that the disabled person doesn’t consider sexy at all – and may even find repulsive. There may be some internalised ableism here, or it it might be because they don’t find that body part or activity sexy. And finally – they don’t want to be associated with kink, because eww.

What this all boils down to is a complicated situation with multiple conflicting views. Which is an excellent point for an half-hour documentary!

Meet the Devotees

I liked it, overall. It was balanced, and nuanced, especially considering it was half an hour long. It didn’t go into some of the issues I wanted it to, but it tried to show both sides. I scribbled notes as I watched, so the following thoughts are (sort of) in order.

Porn: I’ve run across Leah Caprice (aka Paraprincess) before – she’s a disabled porn performer and sex worker. In previous research I did (unpublished; for my masters – into acquired disability and queer identity), some of her videos were mentioned by a participant because they liked seeing a disabled person being sexy, and they felt seeing her doing something sexual/erotic normalised disabled people as sexual people. While she quite clearly thinks those who buy videos and images of her doing everyday things are a bit weird, she’s also happy enough to make these videos. That said, the discussion about porn performance and “non-sexual” acts – particularly “watching the struggle,” “floppy feet,” and so on – is a little uncomfortable. Because dropping stuff isn’t sexy, nor is falling over or going down the stairs on my bum – at least not to me, and I don’t think it’s particularly sexy for Leah either. A lot of people probably wouldn’t find it sexy, but we have culturally constructed notions of what sexy looks like, and just because it isn’t normally sexy, doesn’t mean it can’t be. We have yiffing and splosh and hundreds of other things that I don’t find sexy at all, but other people do. I think this is a case of YKINMKATO (Your Kink Is Not My Kink and That’s Okay) – to be honest, as long as everyone involved is ok with it, I’m not going to object. Leah has the right to choose what she does with her body, including using her body to make money through other people’s sexual gratification.

The definite dark side: this is where I get uncomfortable and a bit angry, but probably not entirely for the reasons you’d think. Charlotte Fielder’s non-sexual photo had been lifted off one website and uploaded onto a devotee porn site – and this is not ok, and her anger and upset is understandable. However, this was presented as though it is something that only happens to visibly disabled people, and is particularly disturbing when it happens to disabled people. But it isn’t. Charlotte is understandably angry over people covertly taking her picture – and those of other disabled people – but this isn’t just something that happens for other people’s sexual jollies. We regularly see clickbait articles about non-disabled people doing kind things for disabled people, and the pictures or videos are often taken and shared without the consent of the disabled person involved (but often involving a quote from the non-disabled “hero”). What Charlotte’s experience shows is a mixture of objectification and a lack of consent – the objectification of disabled people, and a denial of our right to give consent. The focus, however, was on the sexual objectification, but not the lack of consent. The lack of consent is everything here.

Being objectified without your consent is of course going to result in emotional damage. But the culture that condones this behaviour – taking images of people without their consent, for an audience’s gratification – is rooted in ableism and misogyny, in a culture that treats women and disabled people as less that capable, and less than deserving. In some ways, because the people being hurt/objectified/preyed on are disabled we see it as worse – because ableist culture says we need protection (for our own good!), and are also not sexual beings (unlike non-disabled women, who are of course there as decorative scaffolding for their genitals). Charlotte compares it to paedophillia, and in this case, she’s not wrong – it’s predatory behaviour, and despicable and horrible. But this also means disabled people are childlike, and I’m uncomfortable with that – it’s like saying all porn encourages rape, or all kink encourages abuse. Devoteeism is not that simple – and I’d like to have seen this highlighted, or Charlotte’s simplistic portrayal of it challenged.

Negative experiences of devoteeism: the cause of these experiences are creepy devotees being creepy and horrible. That’s undeniable. However, their devoteeism itself is not the cause of them being creepy – their behaviour would still be awful no matter who they were creeping on. And their behaviour may stem from a lack of discussion in wider culture about consent, good relationships, and treating other people like human beings worthy of respect (it may not, and they might just be dickheads) – as well as from a culture with fairly narrow rules about what is and isn’t sexual. The problem of creepy devotees is twisted and arguably confused by the issue of disability – which is not to say it isn’t awful and bad, but that it is a deeper and wider problem. This is behaviour we see elsewhere – catfishing, revenge porn, fake online dating profiles, ghosting, fuckboys on tinder … the list goes on. “I want to suck on your residual limb” is a variant on the unsolicited dickpic, the upskirt photo, or the tube groper.

This is my issue with Michael First, a professor of clinical psychiatry, who also happens to be Editor of the DSM-IV Text Revision (the DSM is the standard classification of mental illnesses) – one which classed fetishes or an interest in BDSM as a mental disorder, regardless of whether everyone involved was a consenting adult. He divides  interest in disability into an orientation or fetish, saying that a fetish has the potential t be harmful, and “can interfere with the ability to develop mutual caring relationships” – which is only true because we don’t talk about consent or sexuality beyond the very normative. Kink can occur within mutual caring relationships, and if kink includes fetishes – then surely devoteeism can be a part of a caring relationship, provided it is mutually consented to. Consent is the key part. And of course if professionals in positions of power situate fetishes outside of normal relationships, they will be pushed under the carpet, hidden away – and thus they will cause harm because of course people don’t want to consent to something they think is weird.

Emily’s Video: Emily Yates, going slightly gonzo here, makes a video aimed at devotee viewers as a part of the programme – however, one of the videos that depicts a visibly disabled person going about their everyday business, albeit doing something physically difficult or awkward. Not what would be more easily recognised as porn – Emily doesn’t get naked or do anything normatively erotic. Some of the proposals made by the devotee community she’s been talking to ask for upset Emily a little (perhaps a lot) – and understandably so. Because what they’re asking for is not her doing something she finds physically easy or straightforward – but something awkward. Essentially, they are asking her to degrade herself for their pleasure – which, if we take an approach from the wider kink community, is only ok if the person degrading themselves is okay with what they’re doing, and aware that what they’re doing is both degrading and getting someone else off. Consent is key.

The Devotees: Emily – and by extension, her audience – meet several self-identified devotees, some of whom are willing to talk online, and others who willingly meet face-to-face. The man’s identity is disguised, but he doesn’t strike me as particularly creepy. When he says “a leg brace or a wheelchair is like a party dress,” it’s a little odd at first – but that’s because I, like everyone else, is not culturally conditioned to think of mobility aids as sexy. I’ll admit, my bar for weird is probably quite high, but Emily doesn’t seem phased either. The woman, Ruth Madison, is a public devotee, and I find her Sims devotee porn weirder than anything – but YKINMKATO, and just like cultural constructions say mobility aids aren’t sexy, it also says porn should involve flesh-and-blood performers and not pixels. Ruth is no more awkward or creepy than your average person when asked to explain their sex lives – because  we don’t have the cultural scaffolding to talk about this stuff – and her talking about her earliest experiences sound a lot like kink practitioners talking about their kink. She admits she likes the accoutrements of disability – but she also wants her partner to be into her being turned on by her fetish. It’s ok for them not to be devotees themselves, but they have to be ok with (if not actually excited by) her devoteeism – consent is key.

Just like Emily making her video – if lipstick and a nice bra is getting you in the mood, and you being you in a wheelchair is getting them in the mood, and you both know what’s getting the other person in the mood, that’s ok. It’s also ok to take your clothes off for money, or take a bath in custard for money, knowing other people are going to get off on it. It’s ok to be into wheelchairs or naked people (in custard or not) provided everyone involved knows what’s going on.

Creepy and predatory devotees are a problem. Any and all creepy, predatory behaviour is a problem. Creepy, predatory behaviour doesn’t respect consent – doesn’t even consider it – regardless of whether the target is disabled or not.

Ultimately, the documentary didn’t make enough of two things: the need for communication and consent in our relationships, and the cultural construction of what constitutes “normal” sexual behaviour. Both of these underpin why devoteeism is seen as “bad” or “weird”, and why disabled people are often uncomfortable with devoteeism and devotees. It’s something that needs more discussion about, from all sides.

 

 

 

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