An open letter to the editor of Exceptionality, and to Prof. Kauffman and Dr Bader regarding the “Extremism and Disability Chic” article (issue 28.1)

Last week, a few people posted about an article by Kauffman and Bader, published in the journal Exceptionality, at the end of last year. I’m not linking to it because those links are used to calculate impact – but the abstract alone might be enough: “Disability and extremism are also changeable concepts, depending on comparison to social norms.  … disability itself should not become chic”. Emma Kennedy has kindly put screencaps online here though. I was gobsmacked, and then infuriated. So were lots of other people – including Emma, Amy Kavanagh, and Steph-Hannam-Swain. The four of us got together and wrote this open letter, below.

If you’d like to add a supporting signature (before 7th May), please fill out the form here [Google form link] or drop me an email.

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Dear Dr Cullen, the editorial board, Professor Kauffman and Dr Bader,

We write to you concerned that you have published under the umbrella of ‘research’ an article that not only perpetuates negative and harmful stereotypes of disability, but erases the lived experience, testimony and indeed scholarship of a great many disabled people. We are concerned that, in addition to perpetuating stereotypes, this reflects poorly not just on the authors, but on the journal’s editors and peer reviewers.

We have a number of points we would like to challenge the authors and editors on. These points are rooted in our knowledge as researchers, educators and disability rights campaigners – and in our lived experience as disabled people. We will cover three main points: firstly, that the authors assume disability is a lesser version of normal (i.e. non-disabled); secondly, their proto-eugenicist assumption that disability is actively harmful to society and should be eradicated; thirdly, that the authors dismissal of equality measures (and the need for further gains) erases existing, and significant, structural inequalities for disabled people.

 

1. Assuming disability is a lesser version of “normal”

At the core of the article is the assumption that “normal” and “non-disabled” are synonymous, and that to be normal is to be better than to be disabled. This is the ableism the authors so casually dismiss as “extremism” – to the point that they deny it as a social structure affecting all lived experience. This is ironic considering the paper is rife with this same ableism. To explore our point here, we quote Professor Bill Hughes, who wrote in 2012 that

“ableism …. encourages us to live in the false hope that we will not suffer and die, to adopt a perspective of invulnerability, to confuse morality with beauty and to see death, pain and disability as the repulsive woes of mortality rather than as the existential basis for community and communication” [i].

We contend that the conflagration between “chic” and seeing your impairment or disability as “not a bad thing” is dangerous. This problematic imagining of disability positivity as a “chic” fad is built upon the assumption that disability is a “lifestyle” or a “choice” – and ignores that disability is a lived experience, which for many disabled people is part of their selfhood.

In writing “but we do not consider a disability a gift to anyone, the person who has one or anyone else.” – the authors seem to suggesting that no part of the lived experience of being disabled is positive and can bring positives to those around them – despite many disabled people, their families and carers expressing many ‘positives’ of disability [ii]. Indeed, research shows that non-disabled people regularly underestimate the satisfaction that disabled people have with their lives and overestimate the ‘suffering’ or negativity of the disabled experience [iii].  Much of the “suffering” caused to disabled people, carers and families is due to society’s lack of support and acceptance – not the condition itself.

In refiguring disabled people’s self-esteem as deliberate contrarianism the authors effectively deny disabled people the right to value themselves except in (negative) comparison to the ‘normal’ of non-disability.

 

2. Assuming disability as actively harmful to society

Kauffman and Badar develop their argument that disability is a “bad thing” by representing disability as actively harmful. The authors continually position mental illness or learning disabilities as the cause of people deliberately inflicting harm on others. This only makes sense if the authors are presuming that all disability is not just negative, but actively evil, and that disabled people hold no positive value for the communities in which we live, the friendships we develop, and the families we are part of. This is an insultingly negative view of disability, and one which reflects the authors’ ableism and their assumption that different is lesser.

Indeed, the authors assumption of disability as socially problematic and unwanted means that they assume that all intervention in the lives of disabled people – including pre-natal testing and termination – is effective, wanted, and necessary, without considering what happens when intervention is unwanted, when it is the site – or cause – of abuse, or a cause of further harm. Many treatments result in pain and psychological damage to those who are subjected to them with little to no functional gain.

When combined with the authors’ assumption that disability is overwhelmingly, relentlessly negative – not just for individual people, but for society as a whole – it is impossible for us to ignore that the authors are straying into eugenicist arguments and beliefs. This deeply problematic argument is further compounded by the disturbing comparison between the alleged “extremism” of individuals positively embracing their disabilities, and the Nazi regime. A regime which portrayed disabled people as “useless eaters”, and justified the deliberate murder of 300,000 disabled people under Aktion T4, a precursor to the larger holocaust.

We categorically reject the idea that to be disabled is undesirable and should be avoided at all costs. This is an uninformed ableist assumption which has concerning connections to the Eugenics movements.

As well as forwarding ableist and eugenicist views, the article reveals Kauffman and Badar’s contempt for the work of disabled scholars and activists, who have spent decades challenging the fundamental premise that disability is abnormal, negative and wrong.

 

3. Dismissing equality measures as ‘special treatment’.

Kauffman and Badar dismiss the social model of disability as viewing disability as ‘simply a matter of bias on the part of others’. On the contrary, the UK social model views disability as created not by “simple bias” but by structural issues. For lots of disabled people their impairment is not the main thing that disables them: rather they are disabled by lack of accessibility measures and refusal by society to prioritise the measures needed to make life accessible. In blunt terms, it’s the stairs that are the problem, not the person on crutches. Society’s attitude to disabled people is not “simple bias;”- for those of us whose bodyminds cause us distress, pain, and other experiences presumed to be negative the lack of resources and social attitudes towards us as disabled people further our disablement.

It is this misunderstanding that leads the authors to write about improvements in society for disabled people – the parking spaces, the increased visibility – as though they are a bad thing. When they say that “in a fair society, [disability] grants no special privilege or treatment,” they do not seem to consider that these things are lessening an inequality. In an ideal society, where disability is just a personal feature, there must be resources and systems in place to counter any disabling effects of an impairment; this is not ‘special treatment’ but equitable treatment.

These moves are making disabled people play on a more equal field as non-disabled people, a field that has been, and continues to be made unfair for no good reason. Kaufmann and Badar’s claim that “laws have made nearly all public places to people who have disabilities” and that the law “guarantee[s] appropriate public education for students with disabilities” – is not reflected in reality in the US or in the UK. Disabled people are still systematically segregated from society [iv].

The authors claim that the “diversity in disabilities […] may make the expression of ‘disability pride’ problematic,” erasing the solidarity that disabled activists create and experience on a daily basis, the very solidarity we have experienced. As the article they cite [v] argues convincingly, diversity does not preclude disability pride. It is this that the authors have failed to understand. It is possible to have pride in a disability, whilst acknowledging the ongoing impact of negative attitudes, barriers to access and challenges to full participation in society. Having disabled people in the world brings with it a rich tapestry of experience, ideas and outlooks on life and situations, if we lost these voices the world would be a worse place for it.

It scares and disgusts us that people with such openly antagonistic, ableist and Eugenic beliefs work in educations and have been given a forum to publish such things seemingly without any challenge. We believe this speaks to a fundamental problem in the academy. At a time when support for disabled students is being cut, and many disabled people are still unable to access higher education due to the failure to provide reasonable adjustments, it is concerning that these views are not only openly held but actively endorsed by publication in an academic journal.

As disabled people – and for some of us, as educators, we hope our letter has provoked serious reflection on your part. We strongly encourage you to consider the attitudes and approaches you have demonstrated in the writing, review, and publication of this utterly shameful article – and we hope future editions of Exceptionality will reflect a positive change.

 

Signed:

Dr Emma Sheppard, Lecturer in Sociology, City, University of London

Ms Stephanie Hannam-Swain, Lecturer in Education, Sheffield Hallam University

Dr Amy Kavanagh, Disability Rights Activist

Dr Emma Kennedy, Senior Educational Development Adviser, Queen Mary, University of London

 

 

 

 

[i] Hughes, Bill, 2012 Civilising Modernity and the Ontological Invalidation of Disabled People. In: Goodly, Dan, Hughes, Bill, and Davis, Lennard (eds), Disability and Social Theory: New Developments and Directions, pp 17-32.

[ii] Lodewyks, Michelle R., 2015. Strength in Diversity: Positive Impacts of Children with Disabilities. The Vanier Institute of the Family. Available at: https://vanierinstitute.ca/children-disability-positive-impacts-children-family/).

[iii] Gerhart, Kenneth A., Koziol-McLain, Jane, Lowenstein, Steven R., and Whiteneck, Gale G., 1994. Quality of Life Following Spinal Cord Injury: Knowledge and Attitudes of Emergency Care Providers. Annals of Emergency Medicine, 23.4, pp 807-812

D.Lulé, D., Zickler, C., Häcker, S., Bruno, M.A, Demertzi, A., Pellas, F.,Laureys, S., and Kübler, A., 2009. Life can be worth living in locked-in syndrome. Progress in Brain Research, 177, pp 339-351

Albrech, Gary L. and Devlieger, Patrick J., 1999. The disability paradox: high quality of life against all odds. Social Science & Medicine, 48.8, pp 977-988.

[iv] Shandra, Carrie L., 2018. Disability as Inequality: Social Disparities, Health Disparities, and Participation in Daily Activities. Social Forces, 97(1), 157-192.

[v] Garland-Thomson, Rosemarie, 2016. Becoming disabled: Roughly one in five Americans lives with a disability. So where is our pride movement? New York Times. Available at: https://www.nytimes.com/2016/08/21/opinion/sunday/becoming-disabled.html

The 5th Vital Sign

Over the last few days, there’s been a fair bit of chatter online about a podcast episode for Invisibilia, published by NPR, called The 5th Vital Sign. I hadn’t listened to the episode, although I do subscribe to Invisibilia. For those of you unfamiliar with NPR or Invisibilia, NPR is National Public Radio, and the closest UK equivalent I can think of is Radio 4, in terms of it being a mix of news, current events, and storytelling – but there are significant differences in terms of funding, political leanings, and content. Invisibilia is a podcast/show that tells a human story (often focusing on a handful of people) but also explores the social and psychological factors; it runs for about an hour, and is the podcast equivalent of a long read article. I’ve listened to it for a couple of years now, because it is usually really interesting.

The 5th Vital Sign episode was interesting, but the negative reviews and responses are, in general, justified. The episode is about pain – chronic pain – and a small-scale treatment programme that has been running since the early 1980s which uses a mix of psychological treatment and exercise to support teenagers living with Amplified Pain Syndrome (which is also called Complex Regional Pain Syndrome). Before I get into things, a few disclaimers and content notes. First: I have chronic pain, from fibromyalgia – which is one of the things adults get to be diagnosed with, and used to come under the umbrella of Complex Regional Pain Syndrome; fibromyalgia is a relatively rare diagnosis in teenagers and children. Second: I know someone with a family member who underwent the treatment discussed in the programme (and had a positive outcome), and although I didn’t know this when I started listening, I know this has shaped my reflections. Thirdly: I research pain from a crip theory and critical disability studies standpoint – which very basically means I am researching about pain in social-cultural-political ways, and not in medical ways, and in ways which, if you’re used to thinking about disability (and especially pain) as a medical issue could be really quite odd at first. Try to bear with me. As for content notes, I’ll be talking about – although quite abstractly – about the abuse of disabled people, and medical trauma. Get comfy.

The episode discusses the experience of a young teenager, Devyn, and her mother, Sheila, at Children’s Mercy Rehabilitation for Amplified Pain Syndrome Program, in Kansas City. It also talks to David Sherry, a paediatric rheumatologist whose research is the foundation for the rehabilitation program. If you have an hour, and haven’t listened already, it is worth a go; there is a transcript here. If you have less time, NPR also have an article based on the episode, but it’s worth noting that some of what I’m referring to is only mentioned on the episode, and isn’t on the blog. Also, since the online reaction to the episode has been so negative, NPR have also issued a statement, some of which is a partial apology.

My first issue has been addressed by others, but I’m going to rehash this a bit too. It’s bad journalism. I don’t think the hosts of Invisibilia, Alix Spiegl and Hanna Rosin, are bad journalists, but I do think in this case they didn’t do something they should have done (or they didn’t include in the episode). They didn’t speak to people with opposing views, negative experiences, or any expertise in pain besides medics (and psychologists). Now, for non-disabled and non-pained people, this might not seem like a massive oversight – especially as the episode is an in-depth storytelling, not a news piece. However, this means that a crucial voice is missing – that of disabled people’s self-advocacy. This is especially an issue when presenting stories of disabled children, because we often hear from parents, and not children themselves, or from disabled adults who were disabled children. This silence quite often reinforces narratives of tragedy and/or cure, positioning disabled children as receivers of pity and in need of medical care. The episode didn’t quite do that – the young people Spiegl/Rosin interviewed spoke for themselves – but it did present those narratives in quite a narrow box of sick child. And because sick children don’t fit the expected norm of how children are (and thus should be) – they are often rather haunting, disturbing figures to the non-disabled. My second issue is to do with this narrative, and how it was presented – without any questioning from the journalists as to how this narrative came to be, or any seeming reflection on why they chose to present this story within the narrative of the sick child; the lack of disabled voices is, for me, a part of that.

The narrative of the sick child – in need of cure – is particularly pertinent in the narrative told by and about Sheila, the mother. Sheila is presented as an involved parent – at one point the narrator describes her as having chronologically-organised medical records for every family member; at another point as driving hours to take her daughter to dance competitions. Her position as a good parent is cemented, but later questioned – the deliberate exclusion of the parents from the child’s rehabilitation is justified by explaining that helicopter parenting is making children less resilient to pain, and their presence hindering the children’s return to normality. As is so often the case with disabled children, the parents are to blame. Nonetheless Sheila is presented as a sympathetic character – she is a good mum, one wanting the best for her child.

At one point in the story, however, it is Sheila who comes closest to expressing the fear that the episode is rooted in – the fear of a sick child remaining sick, becoming a sick adult. I found it especially noticeable that her fear – explicitly stating that she was concerned about her daughter’s identity becoming that of “the sick girl” – is presented at the point in the story where Devyn starts to find other people – other teenage girls – like her, who have chronic pain and can’t fulfil the normative expectations of their worlds. We hear very little about what these friendships meant to Devyn, or to anyone else – except for them being presented as dangerous, as the final step for Devyn being forever sick, forever in pain, forever disabled. This bias against disabled people having their own identity as disabled – this presentation of disability communities as dangerous to normal people – wasn’t questioned.

The fear of sick girls is, like the fear of mothers who cause their children to be disabled, a gendered fear, a fear of the monstrous feminine other – the hysteric, the failed mother. However unintentionally, the episode used these  narrative tropes, these discursive concepts, to pin together the story. Devyn is in pain, and her pain has no obvious origin – her pain must be psychosomatic, hysteric, a teenager looking for attention. This isn’t questioned; it is accepted that her pain is psychological, and that Devyn – and her mother – should continue in their quest to cure her.

The assumption that anyone in pain must want an end to their pain is rooted in ableism; in the normative ideal of a body being pain-free, and of us doing everything we can to avoid being in pain. This is, of course, also why the programme episode was made, why the narrative was seen as compelling – because this is the story of a child in pain, a child doing the right thing in seeking to end her pain, but a child also doing the wrong thing, in experiencing more pain. This brings me to my next issue.

Pain is a problem. It doesn’t fit neatly into any one discursive box – it is bad (because it is a sign of injury) but it is also good (no pain, no gain); we should be capable of feeling pain but we should avoid it, unless it is unavoidable and also a part of self-improvement. Pain has religious meaning and interpretations. It has medical meaning too, and there is an ongoing argument about what medics – and non-medics – should do with pain, especially when it comes to opioids. Increasingly, pain is seen as over-medicalised, over-medicated, especially when it comes to chronic pain and the fears of the opioid addiction crisis. That is, in itself, a nuanced and complicated issue. There are echoes of these fears in the episode, when Spiegl talks about there being no escape from pain – except opioids – and when it is not-so-subtly mentioned that a great deal of James Campbell’s work in improving the prescribing of painkillers was funded by pharmaceutical companies which manufacture opioids. Like the hysterical, sick girl, discourses of medicalising and over-medicating haunt the episode.

Sherry, and the rehabilitation programme run by Dr. Cara Hoffart, are presented as a brisk, no-nonsense alternative to hysteria, to over-medicating. The principle of the rehabilitation programme is relatively straightforward: teenagers with Amplified Pain Syndrome need to learn how to pay less attention to their pain, and to get back to doing normal teenager things, like exercise. Young people today are too coddled, too medicated, and too hysterical.

The last problem is had is with the rehabilitation programme itself. I almost agree with a part of it; I would argue that learning how to pay less attention to pain is a part of learning to live with chronic pain (edit: this was something that came up a lot in my research, along with the need to feel in control of pain, at least sometimes). There is also a part of me which agrees that there is a need for us to learn how to talk about pain – although I would also argue that there is a much greater need for us to learn how to listen to others talk about pain. I’d almost agree with the rehabilitation methods if it wasn’t for two massive reasons.

First: these are children. Children are agreeing – as are their parents/caregivers – to put themselves in a huge amount of pain (the programme casually mentions “puke bags” and nose bleeds like these are everyday parts of exercise programmes) because they want to get better. And yes, these kids do want to not be disabled, and I can’t blame them, because they are living in an ableist world where they are told that disability is awful. One of the big problems people have with living with chronic pain is that expressing their pain makes other people super uncomfortable – especially people who otherwise love and care for us, like our parents. The children taking part in the rehabilitation programme are under a huge amount of pressure from their family and from normative society to get better. I can’t blame them for taking part, for wanting to not be in pain in the long term. But Spiegl and Invisibilia didn’t consider the pressure to take part – the children’s choice was presented as a positive step, and a natural one.

Second: the rehabilitation programme reminded me a lot of Graded Exercise Therapy, or GET. If you’re not familiar with GET, the principle is pretty simple: chronic fatigue (and pain) is caused by deconditioning, and people need to get back to doing normal people things, like exercise. Similarly, it positions chronic fatigue and chronic pain as largely psychosomatic. And the big problem with GET? It doesn’t work and it can be incredibly damaging.

I was struck by the similarities to the point of going and reading Sherry’s paper (he is the first of five authors, so from this point I’ll be referring to Sherry et al) from 1999, on the programme. This is the paper linked to by the NPR blog, and the study mentioned in the episode. It is also the only published record I can find by Sherry about this programme, although since the complaints, other published reviews were linked to on the episode page. Very simply: over a period of thirteen years, 104 children (over two-thirds girls) went through a rehabilitation programme similar to the one Devyn goes though in the programme; there is a long-term follow up after 2 years with 49 of them. Of those 49, fifteen “had had recurrent episodes of disproportional pain … that resolved with institution of an exercise program” (Sherry et al 1999), and one was still in pain despite this. On a very basic level, that’s a “cure” rate of a third, which I suspect wouldn’t be considered a massive success if it wasn’t for the bit where, societally, we don’t really care what people in pain do as long as they do their best to stop being in pain (or at least not talk about it so much). GET has even worse outcomes.

This, for me, was the real root of my problem with the episode. It presented a dubiously successful rehabilitation programme without any apparent consideration of anything except whether or not one girl was able to dance again.

Edit: Having done some more thinking since I hit “publish” on Saturday: I wanted to add something (in part, because of the recent bit of whining bullshit journalism against ME/CFS self-advocacy/activism by known racist misogynist Rod Liddle (among others). It is important to note that I am not against medical care; medicine has a place in the lives of chronically pained and chronically fatigued people, and access to wanted medicine is a disability rights issue. What is also important is that medicine consider the social biases which impact what medicine sees as worthwhile, valid, and reasonable treatment – and for that matter, what we as pained/fatigued people see as worthwhile, valid, and reasonable treatment.

I also know, from my research, that control – that feeling a sense of control, even if that’s occasional – is important to people living with chronic pain. I am just really, really unconvinced (for the reasons I’m getting at above) that putting children in more pain is the way to give them this control. It’s possible that a sense of control can be found elsewhere, and that if control doesn’t include less pain, then that should also be ok.

Project planning for research students

This is something I found really useful with my PhD, and is something I encourage my MA students to do as well – and pass it on to other people starting PhDs.; I thought I’d throw it up on here too, then I can just wave people at the explanation. I use an adapted version to plan out my year, and I’m writing one for a funding bid now. Basically, this is a way of planning out a project at the proposal or planning stage – i.e. before you start – and then using that plan to keep an eye on progress and future issues. It’s based on Gantt charts – which are used in project planning – but obviously simplified.

To do your own, you will need:

One: Excel or other spreadsheet-writing software – you can also do this by hand if you prefer. Electronic copies can be amended relatively easily, which is nice.

Two: A list of your deadlines, or milestones for your project. This might be when you want to submit something to a journal, a conference you need to have sent a proposal off for by, or a meeting. The longer the project, the vaguer the deadlines towards the end – this is one of the bits you will need to update. You should also include any times you know you’ll need time off – holidays, etc. If you have kids, it might be useful to put half terms in there; I would put in hospital appointments or times when work would be particularly busy, so I knew I would have other pressures on my time.

Three: A list of the tasks you need to do. This might be “interviews” or “write draft” – break down your project into the tasks. I put “reading” on mine. These are not super-detailed breakdowns, but a rough idea of what you need to do. During my PhD, I kept a whole-project and a six-month version – the latter being a lot more detailed.

In row one, list your months – or weeks, for a shorter project. In column A, list your tasks and deadlines. Put a symbol in the corresponding month for each deadline (or a number, a letter, etc). For each task, fill the squares in on the months/weeks you expect to work on that task. You can have multiple tasks happening at once – but this will help visualise when you are particularly busy, or when you need to get things done by. Here’s an example:

Example planner screenshot

The idea is to plot out dates where you have to do things – with my PhD, I started with deadlines set by the uni, and also conferences, paper deadlines and the like; obviously for a PhD some of this will be very vague, but this is a working document, not a box. This gives you an idea of your high-stress points – I use it to know when I’ve got too much on to commit to further tasks. When I was writing my PhD proposal, it was really useful to help me think three years ahead. Here’s what my proposal-point plan looked like:

example plan

Reviewing it every so often helped me keep an eye on my progress, but also helped me see where I was getting stuck. And I wrote about it right at the end of my thesis, comparing the “plan” to “what actually happened” to evaluate my method.

Here’s a file I wrote for my MA students  – it has a couple of examples in it. Feel free to download it and use it for yourself!

 

 

The problem with the problem of opioids

Over the last few weekdays, the Evening Standard has been running an investigation series on – according to the title on the 15th of March – the “Opioid Timebomb.” The articles are accompanied by an opinion piece by Dr Cathy Stannard, and two profile pieces on people who have experienced opioid addiction, with a third written by a woman who tried “alternative medicine.” The articles started with “The Growing Problem” so I have started there – but the ordering on the website edition is different.

The Growing Problem article definitely tends towards the sensational, and it focuses heavily on the “cost to the taxpayers” of opioid prescriptions – and it is only in one of the two profiles that the reader hears the voice of a person living with chronic pain.

The front page (of the paper edition) screamed about 23.8 million prescriptions written per year – which is a big number, especially once you express it as “one for every two adults.” However, it isn’t until the third page that you get the figure that those 23.8 million prescriptions are spread between 3.1 million people. But what the article doesn’t say is: how many of those prescriptions are for long-term use, how many are for short-term, and how many are for people with cancer or receiving other end-of-life palliative care. The figure of the 80% rise in prescriptions similarly doesn’t say if the rise is in long-term, short-term, or palliative care, which is crucial when we consider that treatment for pain in palliative care has changed to support more generous prescription and use of pain relief for the dying. The article does go on to say that 90% of the 23.8 million prescriptions are for chronic pain, but there is no source for this figure.

However – those 21.4 million prescriptions for chronic pain in a year isn’t actually unrealistic if you consider that most long-term prescriptions need to be repeated every couple of months, and there are an estimated 28 million adults living with chronic pain in the UK (according to a BMJ article). If all of these 21.4 million prescriptions are long-term, that’s more like 3.56 million  people with long-term opioid use (assuming one prescription lasts 2 months, so 6 prescriptions per year). Which is … a much smaller figure. And indeed, buried in the depths of the article, there is a figure of 3.1 million people on repeated prescriptions for opioids.

I’m not questioning the numbers themselves – they actually sound fairly reasonable to me – but questioning the use of the numbers to present the “opioid timebomb” does cast it in a sensationalist light – because “11% of people with chronic pain are on long-term opioids” sounds less urgent, as does “4% of the UK population receiving treatment for chronic pain, and it may not be working for them anyway.”

The article also assumes that 90% of long-term opioid use doesn’t work. This figure is sourced from a 2013 BMJ article by Moore, Derry, Eccleston and Kalso. Incidentally, the Standard article quotes that article as being titled “Expect analgesic failure” – when the title is actually “Expect analgesic failure; pursue analgesic success,” which isn’t quite so snappy sounding. The article doesn’t state that 90% of all long-term opioids are useless. It states that tapentadol and oxycodone were not effective in reducing chronic low back pain more than 50% (which is counted as failure in some clinical trials). This might be consistent with other opioids for chronic low back pain – but this isn’t the same thing as 90% of all prescribed opioids were wasted, which is what the Standard article implies instead. This returns to the same issue as above – the misuse of figures. There’s a big difference between failure for 90% of all long-term use, and failure 90% of long-term use of two of several possible opioids. Then, in casting that 90% figure in terms of “taxpayer money” (“£210 million … went on pills that did not work”) the article doesn’t frame it in terms of ineffective treatment, but on people with chronic pain as a burden.

This, for me, is the real problem with these articles. Chronic pain is hard to treat effectively, and harder still to live with. People living with chronic pain are already cast as failures – there is a tendency to blame individuals for their ill health and disabilities – and casting them as a burden is just more ableism. I’ve no doubt the Standard would cast any long-term treatment for chronic pain in terms of ‘taxpayer cost’ without considering the impact of doing so.

The article also calls for improving regulation around warning of addiction risk – I can get behind that to some degree, but just like casting the cost of medication in terms of taxpayers, it isn’t a neutral action, as it makes it easier to blame people for thier illnesses (just like we blame smokers and fat people for their cancer). It also isn’t about how prescriptions work – people rely on their GPs to prescribe medication that is appropriate despite the possible risks. And it’s worth noting that both Dr Cathy Stannard (who wrote an op-ed and was quoted extensively in the piece) as well as addiction charities agree that in reality of moving from prescription to addiction is relatively rare – and there systems in place already within the NHS which prevent a lot of the issues with the US system.

The impact of changing how opioid prescribing works is already a massive concern to disabled people – the US is exploring limiting how much a person can access on prescription (the National Committee for Quality Assurance is considering a limit of 120 milligrams of morphine equivalent daily over a three-month period), but this is a blunt instrument approach; it won’t do much of anything to help either addicted people or people with chronic pain. It doesn’t do much in terms of ensuring people with chronic pain get access to alternatives – which is the other side of the coin.

When we consider limiting access to painkillers, what else do we offer? Opioids – and other non-opioid painkillers – don’t stop pain effectively, but it isn’t about stopping chronic pain completely (we don’t understand chronic pain enough to do so) – it is about managing chronic pain in ways that support people to live fulfilling lives with chronic pain. And that’s hard to do, because it’s expensive – probably more expensive than £210 million per year.

 

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.

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 Misconceptions, and 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.

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.

 

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).

 

#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.

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.

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.

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.

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.

And here’s her ladyship herself: