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.