Posted by: Lisa Hill | January 21, 2016

Dancing in My Dreams, confronting the spectre of polio, by Kerry Highley #BookReview

Dancing in My Dreams

Dancing in My Dreams is not the first book I’ve come across that betrays its origins as a PhD.  This study of polio epidemics in Australia and overseas, the controversy over treatment methods and the eventual development of a vaccine has some interesting points to make, but it is weighed down by the writing style, referencing and repetition which makes the book a bit of a plod to read.

Anyway…

For most Australians, polio is a disease that happens overseas, in places like Afghanistan, Africa and Pakistan.  It’s not a problem here, they think.  Which is why I’m going to begin with a quotation from the final chapter:

A 2003 NSW Public health report concluded that although there had been an improvement in immunisation coverage, in an area in northern New South Wales around Lismore and Byron Bay the level of conscientious objection to immunisation was high enough to allow outbreaks of disease to occur.  In March 2007, a 22-year-old Pakistani studying in Australia returned to his home for a holiday.  While in Pakistan he became ill with nausea and flu-like symptoms, and noticed some weakness in his legs.  Despite not feeling well, he boarded Thai Airways flight TG999 and arrived back in Melbourne via Bangkok on 2 July.  The following day he felt increasing pain and weakness in his lower limbs and was admitted to Box Hill Hospital in eastern Melbourne on 6 July.  Initially, polio was not suspected because of his age and the fact that he had received three doses of Sabin vaccine as a child, but he had not received a booster polio vaccination before travelling to his homeland where polio is endemic.  Polio was diagnosed after [a] Magnetic Resonance Imaging (MRI) scan revealed the classic changes of the disease in the anterior horn region of his spinal cord, and the patient was isolated and moved to a single room.  Half the passengers on flight TG999 have been traced and given booster shots of polio vaccine, but over one hundred could not be contacted.  Those airline passengers have indeed been fortunate to not contract polio, for the student on board with them was infectious, and spreading wild poliovirus. (p174).

You can see editing issues here: a comma missing after Byron Bay, a missing indefinite article before MRI, and the lack of any connection between the first sentence and the rest of the paragraph.  We are meant to infer, I think, that it’s just as well this Pakistani student didn’t take a side trip to Byron Bay, or that Byron Bay passengers were lucky not to be on the same flight.  And that’s what’s unfortunate about this book: so much space is taken up by long-dead conflicts over treatment methods, that the important message about continued vigilance against this incurable disease seems like a bit of an afterthought.  There is also not much about Post-Polio Syndrome which affected a relative of my age and contributed to her early death.

Still, despite the clunky wording, the book has an important message: polio is still around, people in privileged western countries as well as people in developing countries are still at risk, and polio is a truly horrible disease.  Although now the method of transmission is known, there is still no cure, and despite some improvements, the disease is still not always diagnosed quickly enough, it is extremely painful, it is distressing for all members of the family, and it can still be a crippling or fatal illness.  The author interviewed many people who had polio in the years before vaccines all but eliminated it in Australia, and their stories are harrowing.  Little children who had to be kept in isolation while they were in the infectious stages; adults whose relationships with their families were impacted; entire families who were rejected by their communities for fear of infection.  (I’d also recommend Joan London’s award-winning novel The Golden Age as a sensitive story about the impact on children and families.  See my review). Highley shares stories of excruciating pain; loneliness; months and years in hospital; loss of self-image and confidence; feelings of being violated by the treatment; discrimination in employment; and poverty.

Things happened so quickly.  My world turned upside down, things spun out of control.  Mum and Dad disappeared and all these strangers took over and they took me away. I was put in a room with high ceilings.  There were all these other children there and all sorts of terrible things were happening to them.  Some were in boxes that hissed and wheezed [iron lungs] while others were tied up in bed [in splints] and couldn’t move.  I started to cry, I wanted my mother.  But they were cross and told me to be quiet. (p.23)

Overworked nurses didn’t have time to comfort distressed children, and one crying child would wake up all the others.  It was a nightmare both for the patients and the staff…

I did have some reservations about the way the controversy over treatment methods was handled by this author.  The dispute between conservative management promoted by Dr Jean Macnamara  (involving immobilising the limbs) and the methods promoted by Sister Kenny (involving gentle manipulation and stretching) is represented as an inflexible medical profession defending its own patch to the detriment of patients and as a triumph of medico-science over folk medicine and homeopathy.

Unfortunately, most Australian survivors of polio were denied access to her [Sister Kenny’s] treatment because of the dominance of allopathic [see below] medicine in Australia, and an unwillingness by medical practitioners to return to the medical pluralism that had flourished in pre-Federation Australia.  The major player in alternative medicine in Australia had been homeopathy but, by 1930, homeopathy was no longer a provider of mainstream medical care. (p.4)

*Allopathic medicine is an expression commonly used by homeopaths and proponents of other forms of alternative medicine to refer to mainstream medical use of pharmacologically active agents or physical interventions to treat or suppress symptoms or pathophysiologic processes of diseases or conditions. (Wikipedia, viewed 15/1/16)

The words allopathic and homeopathic rang alarm bells for me.   While I think the medical profession should be open to evidence-based alternatives, it was the author’s linking the idea of medical pluralism embracing homeopathy as a legitimate medical therapy with the unwillingness of doctors to try alternatives at the time of this treatment dispute, that made me feel a bit doubtful about what I was reading.  There is no evidence whatsoever that homeopathy is effective and it is unquestionably an expensive form of quackery with occasional fatal consequences.  Recent  articles and reports have made this information mainstream, and you don’t need to have any interest in science or medicine to have heard about it.

NB If you want to argue the science, please do it in those forums i.e. not here on this blog.

The author is very hard on Dr Jean Macnamara and medical organisations representing ‘establishment medicine’ but her analysis of the Kenny alternative is benign by comparison, or so it seems to me.  It doesn’t seem unreasonable to me that doctors then as now were wary of unqualified people claiming to have a cure (as Kenny at first claimed) or an effective treatment that wasn’t able to be verified by evidence.  Highley acknowledges this on page 96:

1944 was a very bad year for polio in America and a very bad year for Sister Kenny.  The American Medical Association featured prominently in a campaign to discredit Kenny by claiming that ‘the public and many doctors’ had been misled about the effectiveness of her treatment, in particular the use of hot packs to lessen pain and that there was nothing new about her methods.  The continuous use of the packs was described as of ‘questionable value and a waste of man power and hospital beds’.  They criticised her recovery rates, saying she did not separate ‘spontaneous recoveries’ in her statistics.  How could she?  At that stage nobody knew how polio was transmitted, or its epidemiology or aetiology.  The symptoms and subsequent consequences of exposure to the poliovirus were so wide-ranging from patient to patient that comparing the results of different treatments was almost impossible.  Some patients recovered quickly or spontaneously while in others the paralysis remained obstinate and difficult to treat. (p. 98)

And that’s the nub of the problem.  Anxious to avoid the gross deformities that polio often causes, (a Google search will show you how awful they can be), doctors wanted evidence that an alternative wouldn’t exacerbate the problem, and Kenny couldn’t provide it.  She didn’t have the medical training to be able to describe her methods properly, and even if she had, only a large scale trial involving a hundred patients or more could have been a valid way to substantiate her claims.  A Queensland Royal Commission repudiated the Kenny method, but public opinion was on her side, egged on by the media.  It is indeed fortunate that the arrival of vaccines made the controversy irrelevant, at least in western countries.

Highley does acknowledge that Kenny was her own worst enemy in some ways, rejecting any questioning of her methods as criticism, and being not entirely truthful about her experience and qualifications as a nurse.  Nevertheless, the hundreds of words given over to this treatment dispute became wearisome to read, whereas the words of the suffering children and their hapless families were compelling and unforgettable.  Likewise, the history of the development of the Salk and Sabin vaccines was interesting to read, and provided me with the answer to something that has puzzled me for years: why Australian immunisation began later than in other countries, and why Australians in my age group caught polio after the vaccine was available elsewhere.  A lack of quality control in Bundaberg had led to tragic consequences with a diphtheria vaccine in 1928 (it wasn’t refrigerated as it should have been, allowing toxins to grow in the tropical heat) and that made Australian authorities very cautious about ensuring public confidence in the new polio vaccine.

As a social history, Dancing in My Dreams has value, and I’d like more people to know about just what’s at risk if we are not vigilant about vaccination rates, but I am not sure who the intended audience is for this book.  It’s only 177 pages, not counting the data charts, extensive notes, 30-page bibliography and the index which takes it up to 262 pages, but somehow it seems longer than that.

See also Kristina Olssen’s review at the SMH.

Update 15/2/16  I’ve just come across this review which includes a critique of some of Highley’s conclusions about how the incidence of the disease paradoxically increased in the wake of sanitation reforms and that all social classes were equally  afflicted. I don’t have the expertise to evaluate the opinions cited, so I suggest you read it for yourself.

Author: Kerry Highley
Title: Dancing in My Dreams, Confronting the spectre of polio
Publisher: Monash University Publishing, 2015
ISBN: 9781922235848
Source: Review copy courtesy of the author

Availability

Fishpond: Dancing in My Dreams: Confronting the Spectre of Polio
Or Monash University Publishing


Responses

  1. Reblogged this on The Logical Place.

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  2. Thanks Lisa. It sounds like a tedious book – good on you for making it to the end! I loved The Golden Age. As someone affected by polio when I was eight – fortunately for me, no visible legacies and I didn’t need to be hospitalised – Joan London’s novel gave a wonderful insight about that particular period of Australian history and the impacts of the disease. Best of all, it was a thoroughly good read!

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    • Oh, yes, I was stunned when The Golden Age didn’t win the Miles Franklin. I still get a lump in my throat about Little Albert’s valiant quest to get himself home. It’s a novel I’ll always remember.
      I won’t say you were ‘lucky’ because no one who had polio was lucky, but personally knowing people who were affected by it makes me aware that this disease perhaps more than any other was traumatic even when the child wasn’t crippled by it. I remember a mother telling me in an unguarded moment that polio had ruined her life as a young mother… her life was filled with hours and hours waiting at the hospital for endless outpatient appointments with her other small child who had to come along too, surrounded by other damaged children whose misshapen bodies frightened both her children. Her life was filled with fear of the future, terror that her child would end up like the others with calipers and crutches for life, anxiety about the effect on both her children, anger about not being able to do the things that her former friends were able to do with their children, sadness about her pretty little girl not being ‘pretty’ any more, and perhaps worst of all, guilt about her own feelings which she was unable to express until she was middle-aged. Mother-love is such a powerful emotion, and as a teacher coming across disabled children throughout my career, I often thought of this woman’s courage in suppressing her own devastation in the interests of her child. Today there is counselling, and people are much more accepting, but back in the 1950s, there was nothing and people were expected to just get on with it.

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      • Oh, the courageous Little Albert. It really is a book of beauty. I think I was very lucky, Lisa. It took a year before I was properly diagnosed. In the meantime my appendix was whipped out (just in case) and the pains and fever were put down to ‘growing pains’ (do we even use that expression any more?). As soon as the attack was discovered, it was a full back brace, a (slightly) built-up shoe, and a few years of gruelling physiotherapy. But no lasting disfigurement. Unlike the only other girl from my small country town. She was a little older than me and had spent a year in a full body-caste in a Melbourne hospital, isolated from her family. Later, I remember my horrible guilt seeing her limp along the street one day wearing a massively built-up shoe, and calipers and crutches. It was scary. As I’m sure it was for all our mothers (and fathers), as you say.

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        • I feel guilt myself about being scared of children in callipers and braces. I was only a little kid and didn’t know any better, but now when I look back on it and think about the effect it must have had on the children with polio, I feel terrible about it. If only we could turn the clock back and undo the cruel things we unwittingly did as children!

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          • Yes if only, Lisa. And beyond… If we could undo. Or not do. My symptoms were largely hidden, and I abandoned my awful shoes as often as I could and then go bare foot. As for the poor Mums: I had just turned eleven when my brother was paralysed which was catastrophic for my mum.So my brush with polio, paled. Puts life in perspective. His ‘injuries’ were far worse than mine. Thanks for the stirring post.

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            • My goodness, your family had more than its share of bad luck. I can only hope you had good support from family and friends…

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  3. Thanks Lisa, this review and your useful links are timely – I’m doing a little research into polio for my biography of Elizabeth Macarthur. It seems likely her eldest daughter contracted it as a teenager and may subsequently have died from post-polio syndrome at age 50. Like you, I have a relative who suffered polio as a child. It’s all still very close to home, isn’t it?

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    • How interesting! Perhaps you should get hold of a copy of the book because there are heaps and heaps of references in the bibliography which could be useful? Also, her quotations from children and families would give you an insight into feelings and attitudes even though she covers the 20th century rather than earlier.

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  4. Thank you for an interesting review Lisa. Like yourself I was impressed and moved by The Golden Age so it’s a pity Highley’s book misses the mark.

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    • I’m not sorry I read it, but, well, I tend to be a determined reader. I have to really loathe a book to abandon it once I’ve started it, and although I can’t say that I really liked this one, I can’t say that I disliked it either, and I never contemplated abandoning it. (As I hope you can tell from what I’ve written) I learned a lot from reading Dancing in My Dreams, but my concern is that it could reach a much wider audience if it were more engaging for a general readership. But perhaps that wasn’t the intent, I don’t know.

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  5. Interesting to read your review (I won’t get the book) & also the comments of others. It sounds like I need to find a copy of ‘The Golden Age’ though.
    During the polio epidemic of 1961 in the Illawarra region of NSW, my 3-y-o brother, Dad & my 14-y-o sister contracted the disease. Unlike Dad & my brother, my sister had received the Salk vaccine (as had my other sister, older brother & myself.
    Sister recovered fully, but both Dad & David were affected, with Dad refusing to be put into an iron lung. Later, he was in a full body caliper & body brace. However, Dad fought the effects of polio &, after several years of increasingly hard physical work, returned to almost complete function, though his chest muscles were weakened.
    My brother’s lower leg were affected & he wore a caliper for many years (it had also thrown out his back). Around the time he turned 50, he had major trouble with his leg, resulting in an operation that wasn’t really successful, & still suffers pain & mobility problems. This was perhaps an example of post-polio syndrome.

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    • Hello Linda, welcome to chatting about books at ANZ LitLovers, and thank you for sharing your compelling story. That must have been a catastrophic experience for your whole family. I hadn’t realised there was an Australian epidemic as late as 1961 – though it’s probably included in the statistics at the back of the book and maybe elsewhere too. The book is dense with information so I may have missed it, though I think it would have jumped out at me if I’d seen it.
      The book covers the quite complex distinction between the two vaccines (Salk and Sabin) and their respective effectiveness, and how many doses people should have, and how it took time for researchers to understand all the complexities. There’s also information about the different kinds of poliovirus that there are, but as I said in my review, there’s not much at all about post-polio syndrome. Perhaps that’s because not much is known about it yet, or maybe the author felt it was outside the scope of her book.
      But my guess is that knowing ‘facts’, isn’t much help to families in dealing with the emotional fallout and the practical consequences. I hope the NDIS is providing the sort of support that’s needed…

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      • It was a pretty tough time back then, Lisa, and we did struggle. However, we were more fortunate than some, as there were several fatalities during that epidemic.

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        • That in itself would have been difficult: children today very rarely have to deal with the death of children their own age, and when they do, schools provide counselling and grief therapy. It’s an entirely different world now, in lots of ways.

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