Category Archives: disability

#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.

Panorama, painkillers, and pain.

I’m watching the Hooked on Painkillers episode of Panorama from the 2nd. I’m quite often leery of this sort of programme, as I think it can feed into the perception of people with a need for painkillers as drug-seeking, and further limit the access of people with chronic pain to longterm pain relief. People like me, really.

I’m not exactly reassured by the opening blurb, that informs me – over the dramatic synth OMG NEWS theme music – that there are people in the UK who are prescribed pain relief medications which are “in the same category as heroin.” Oh do fuck off, Declan Lawn. That’s opiate painkillers – morphine (check), codeine (check), tramadol (check), fentanyl, and oxycodone, and some others. I’ve taken opiates, as have other family members and friends. Scaremongering bullshit like that isn’t helping anyone. “I’ve got really nice boots on, I can’t possibly be [an addict], ” announces a middle-aged woman in a “nice” living room. Dear god. This is going to be awful.

8 million people with chronic pain in the UK (according to the National Pain Audit). We are introduced to a woman with spinal problems, osteoarthritis, and fibromyalgia, who takes a myriad of painkillers, and other medications. When she explains what she takes, we aren’t told what is and isn’t a painkiller – but she’s taking various antidepressants and others that aren’t primarily used for pain relief alongside painkillers.

“Once, [opioid painkillers] were reserved for cancer patients. But not any more.” Possibly because doctors have realised that chronic pain isn’t bullshit and does in fact require long-term pain relief? Lawn tells us that it is due to a culture shift, but doesn’t really explain what underlies that shift – whether there is a change in licensing, in diagnosis of chronic pain, or of how doctors are trained to deal with medicating chronic pain.

We’re a third of the way before we start to explore what the culture shift might be – after watching the lady with fibro and the middle-class addict with nice boots have described their experiences. But Martin Johnson from the Royal College of GPs only gets a few seconds to explain a little bit (he mentions the role of an ageing population, and that pain relief is a basic need), before back to Lawn starts in with the doom-mongering. Cue sad harmonicas. Cue big pharma. Cut to a few seconds of a film showing young black men on a street, leaning against a graffiti-covered wall, and a grainy news clip in which a panicked-sounding woman tells us of armed robbers in pharmacies. I’m not saying that oxycontin and other opioids aren’t addictive, and that there isn’t (wasn’t?) a thriving illegal trade – but this seems to be over-egging the pudding a little bit.

Lawn takes us to rural Kentucky, the “Ground Zero for the epidemic of prescription opioid abuse,” to talk to men in rehab, as well as a doctor whose son overdosed on oxycontin. Lawn doesn’t mention that it’s entirely possible that the two men who turned to illegal oxycontin also struggled to afford perfectly regular prescriptions, because America’s healthcare system is fucked up.

Oh good, back to Martin Johnson, who seems to be our voice of reason. He points out that while we can learn from America, the differences between the NHS and the US system are different enough (at least for now) to mean that there are also very different factors at play. Johnson seems to be leaning towards saying that there isn’t enough guidance for GPs – which is fair enough. My GP knows very little about fibromyalgia, and it’s been several years (and several house moves, and therefore several GPs) since I saw a GP who did. But we aren’t allowed to dwell on what that guidance would look like, because it’s time to find another middle-aged, respectable man to tell us about what it’s like to be in constant pain a drug addict. His family helps him manage his pain, and his medication – he is going to a pain clinic, because he wants to take less painkillers. Like every other person in chronic pain, he seems to be balancing the need for pain relief with the risks and reality of being dependant on prescriptions. I’m dependant on my prescriptions – not just my painkillers, but on my antidepressants too.

24 minutes into the programme and Lawn mentions that the lady with fibromyalgia isn’t just getting help with her painkillers, but also with her pain management. Perhaps this is the problem – that it takes months, if not a couple of years, to get to a pain clinic, where medication is integrated with other forms of therapeutic pain relief? Maybe that’s why there’s also a problem – we don’t have any other choice but to take painkillers, because we need some relief while we sit and wait for referrals, assuming we live where there is a pain clinic, and we have a GP who can refer us. Cathy Stannard, a Consultant in Pain Medicine tells us that coming off opioid painkillers is better even if there is no alternative – that opioid painkillers are best in the short-term.

The problem being that there is nothing else to offer. Some people probably are prescribed too many painkillers, for too long, and too frequently – and some GPs probably do jump straight to heavy-duty opioids before trying some of the others. But there is frequently no alternative – and being in pain is not acceptable, both to individuals in pain, and to society at large.

We have a crappy relationship with pain, in our society. Pain is cast as very, very negative – being in pain is constructed as unsustainable, as impossible to live with. A person in pain is not a person – they’re less than human, an animal. Doctors see pain as a personal affront – just as any other symptom needs to be cured quickly; pain is suffering, and suffering must be stopped as quickly as possible. People who live with chronic pain challenge this ideological standpoint, and there is a huge temptation to shove them under the rug, treat them quickly with what should work, rather than taking the long route. That is the real problem – not the people in chronic pain, and not the people in chronic pain who are dependant on painkillers.

 

 

 

 

Language and Choices

In a brief twitter conversation with the people over at PhD(isabled), I found myself re-reading the Society for Disability Studies’ Guide to Accessible Presentations. The guide mentions using Simple English, or moving towards Simple English. I’ve come across Basic English while teaching EAL (English as an Additional Language), and while I can see the appeal, I find the rules actually restrict language, particularly when it comes to communication between mother-tongue English speakers and English learners, due to the ommission of words that would be included in everyday conversation.

Simple English, or Simplified English, while new to me, seems to be a more comprehensive version, which has a less strict approach to Basic English, increasing the vocabulary list from 850 words, to around 2000. This collection of words is one I recognise again – the General Service List, which is a collection of the most frequently used words in English. There are a number of secondary lists, including one for Academic English – the Academic Word List. This list is used when IELTS is taught – and while lots of them are recognisable as non-academic words, there are also words like “paradigm”, “context”, “ethnic”, and “implications”; these are the sort of words I wouldn’t teach in a General English class until students were already at an advanced level, but would be needed by students who were trying to read an introductory social science textbook.

I have to admit, the idea of writing in Simplified English is both appealing and awful. I do like a run-on sentence, but at the same time, I’m aware that I’m equally irritated by books and articles that I read which seem to be purposefully hard to read – and certainly would be impossible for my IELTS students, or anyone who hasn’t previously been introduced to concepts those texts discuss. I’ve not really thought of myself as a theorist – which is probably to do with having started in tertiary education as a scientist, rather than a sociologist; theory is something I read and try to apply to the world, not wrestle with myself. A lot of the theory I read is the most difficult to understand, and this is why I find Simplified English appealing; I wonder if it would be possible to write theory using a more limited vocabulary – and taking the time to explain topics and concepts as you go.

Another reason this appeals is that I will be using a lot of theory in my research – theories of embodiment, of gender, sexuality, language, power, disability, illness, and pain, and probably half a dozen more I’ll come across in six months’ time and decide are absolutely crucial for me to include. But at the same time, I want disabled people to benefit from my work, and this means my work needs to reach them – and therefore be readable and understandable by people who have no training in sociology or related disciplines.

I don’t know if it will be possible. I don’t know if it will be too wordy – if I’ll end up using complex words as a shorthand for concepts that might take a while to explain, or if it’ll end up less comprehensible because I keep stopping to explain what it is I’m going on about. But, at the same time, I think it’s a concept I’m going to play with.

 

Thinking critically about critical thinking (or, down the rabbit hole)

One of the things I’ve been considering lately – other than why my spacebar keeps sticking – is the role of critical thinking, and reflexive thinking, in my reading and in the development of my methodology. For me, the two are intertwined in ways that mean I can’t completely separate the two; when I read something critically, my views and understandings are always influenced by what I want to get out of that piece, as well as by who I am – my understandings, experiences, and biases.

What I’m finding though, is that the more reading critically/reflexively becomes a practice in my studies, the more it becomes a habit in the rest of my life; reflexivity is becoming a reflex itself. For example, G and I have started watching Friday Night Lights – an engaging if not overly cerebral drama based on a film (in turn based on a non-fiction book of the same name) following a small town and a high school American football team. I’m enjoying it, even if I have barely grasped the basics of American football (I’m hampered by my inability to stop chortling over “tight end”); at the same time, I’m finding myself interested Street’s storyline.

Street is – and spoilers ahead – or rather was the star quarterback of the team; he has a close relationship with the coach, and is cast as the kid who has it all – he’s town hero, he’s likeable, he has a “hot” cheerleader girlfriend, it’s assumed he’ll get a sports scholarship to a college, where he will play football, then be signed by an NFL team and turn pro. Street’s life – and by extent, the whole town’s – is disrupted when he is injured in a match, leaving him paralysed. The treatment of Street’s disability is where the critical thinking really kicked in for me; Street asks about sex – and his rehabilitation center roommate, Herc, answers honestly and hilariously. Herc’s masculinity is firmly in place – one of his first lines is aggressively hetero, and disablist, and he’s set up as antagonistic from the get-go;

“Hey when you’re done putting the newbie into that gay wheelchair, let me know…I don’t mean gay as in ‘homosexual’, I mean gay as in ‘retarded’.”

Herc isn’t a nice character when he enters. He’s an arsehole, and he remains an arsehole, even when he quickly becomes the arsehole-with-a-heart by being the one who gets Street into murderball and berates him into not “giving up” – but he isn’t, at least in the first ten episodes – an inspirational supercrip; he’s too aggressive, too flawed and unrehabilitated for that. He’s not the compliant crip body – he’s loud, and sexist, and manly, and Street is encouraged to take him as a model.

Then I’m wondering if the actor playing Herc is disabled, and a quick look on IMDB confirms that he isn’t, and I’m thinking about how disabled actors are rarely cast in mainstream shows, playing disabled characters, and why I find that so irritating.

But I’m getting this while watching TV. After I’ve put my books away and made a conscious choice to walk away from work. And I’m left reflecting on why it’s become something I reflect on.

Another example here – and this is personal, so bear with me. I have fibromyalgia, and in the course of looking for ways to manage it, I’ve started a course of mindfulness meditation to go along with the antidepressants and painkillers. Friday was the first day, and so I’m lying on the floor of the room with several other people, on a yoga mat, questioning why I didn’t get a pillow or choose to do this nonsense sitting up, listening to the counsellor talk us through the body scan (which is, basically, lying – or however you’re most comfortable – and focusing your attention on different parts of your body while controlling your breathing).

And I’m thinking critically about it. About why I’ve been silent in the group so far – in the first instance, because after one person said the raisin we were supposed to be eating mindfully said it made her think of a brain, when it made me think of a clitoris, and because I didn’t want to discuss my decision to do the 5:2 diet in why I didn’t eat the raisin – and then about the counsellor’s word choices; why this has been called the Body Scan rather than Savansana, why she says genital region instead of any other word choice, and then why my brain is so busy with that I’ve entirely forgotten which body part I’m supposed to be infusing with awareness. To be honest, it was awesome and I felt wonderfully relaxed, despite all of this.

But I’m not sure thinking critically is part of the process – perhaps reflexivity is, but the overall aim seems to be about acknowledging and letting go of reactions and feelings, rather than picking them apart before flattening them with Foucault. Because I did start to think about the role of counselling and power and rehabilitation – probably because I’ve been reading around those issues, so they’re on the brain. I got so busy thinking about that, I didn’t pay half as much attention to what the other group members were saying.

Nonetheless, here I am, thinking critically about my own silence, and reflecting on my own reflexivity. It’s become a habit, and I’m pretty ok with that – perhaps it shows that I’m taking on board at least some of what I’m reading. Perhaps I’m becoming more accepting that these tangents might actually be helping, provided they don’t let me get too distracted from what I should be doing.

And now, if you’ll excuse me, I have to go lie on the floor with the dog and think about my big toe.

Foucalt and the social model

I’m currently reading Foucault and the Government of Disability, edited by Shelley Tremain (2005); I read it a few years ago, but not properly, and certainly not critically – so I’m re-reading it.

Foucault is one of those theorists whose ideas I love, but I find wading through his ideas a bit of a struggle – although I admit I often have this issue with a lot of theorists; theory seems to inevitably lead to verbosity. She wrote, with a tendency to write a paragraph when a sentence would do herself.

Tremain’s introductory chapter lays out the basic concept of the book – Foucault’s work on bio-power and government, particularly normalizing structures and concepts that are perceived to empower rather than constrain, can be used to explore disability. The rise of bio-power is linked, briefly, to the development of the concept of normal – which I liked as a concept when Lennard Davis wrote about it in Constructing Normalcy (Disability Studies Reader, 2006, pp. 3-16). I think – or at least I think at the moment – that this concept of the “normal person” is particularly useful when thinking about disability, as well as BDSM and pain – none of them are “normal”, although pain can perhaps be perceived as a normal part of life (indeed, the loss of the ability to feel pain – physically or mentally – is cast as an impairment; it is only when pain becomes chronic that it becomes an impairment).

That said, I have an issue with Tremain’s contention that a Foucaldian understanding of power and government is incompatible with the social model of disability. I will be the first to admit that I have an issue with the social model, in part because of pain; I struggle to see how a strict reading of the social model – that we are disabled by society, not by our impairments – takes account of the problems that impairment can cause; there is little space for links between the two halves of disability and impairment. The experience of impairment, particularly chronic pain – and here it becomes much more about my own experience – is for me disabling, in that it restricts me from doing certain things, or from enjoying activities; it is not, however, an external disabling – I am disabled from within, and no amount of removing barriers is going to stop pain from being a problem.

With Tremain’s reading, the social model uses “juridico-discursive … conceptions of power” (p. 9); power here is repressive, and comes from a centralised authority. However, I would argue that disablement, as a process or experience, is much more about Foucaldian governmentality than it first appears. Yes, there are repressive structures – particularly when it comes to the built environment and physical barriers – but there are also those regimes and technologies, which disable in more subtle ways. The regimes of – for example – psychotherapy and physical fitness – act to disable by creating impairments, or structuring impairments (in this case, mental health issues and weight) as problems to be cured; being sane and “fit” is both the normal, and the empowered way – and remaining mad and fat (and therefore disabled) is a choice. These more subtle regimes of bio-power force disability on the impaired body by creating the idealised, unrealizable normal, then casting it as an empowering choice; it is this that leads into the concept of compulsory able-bodiedness as suggested by McRuer in Crip Theory (2006).

Having said all that – I agree with Tremain’s reading of impairment – “the constitutive power relations that define and circumscribe ‘impairment’ have already put in place broad outlines of the forms in which that discursive object will be materialized … the category of impairment emerged, and in many respects, persists in order to legitimize the governmental practices that generated it in the first place” (p. 11). It is this construction of impairment – as well as the embodied experience of that construction, of being impaired – that needs examining in order for the social model to be improved; society disables the impaired body, it represses and restricts; but the construction of impairment itself is a control upon disability, and unpicking how the two are tightly linked (instead of being discretely consequential) may well help to destabilise disability/impairment to the point where it is no longer possible to be disabled – only somewhere on a spectrum of bodily form.