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.

***

 

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.

 

  1. 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.

 

  1. 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 Forces97(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

Advertisements
Posted in Uncategorized | Leave a comment

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.

Posted in Uncategorized | 3 Comments

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:

It is an image of a spreadsheet, with columns running left to right representing months, while the first column is titled "task". The months to work on the task are coloured in differently for each task.

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-timescale-e1535034815664.png

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!

 

 

Posted in Uncategorized | Leave a comment

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.

 

Posted in Uncategorized | Leave a comment

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.

Posted in academic, disabilty | Leave a comment

Post-viva flump

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

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

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

But.

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

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

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

Posted in Uncategorized | Leave a comment

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.

 

Posted in academic | Leave a comment