Polio – an ever-present risk

polio-risk-covid
An iron lung, St. Bartholomew’s Hospital, London: a patient inside a Drinker respirator, attended to by a nurse and a doctor. Photograph, ca. 1930. Credit: Wellcome Collection. Attribution 4.0 International (CC BY 4.0)

Polio is my counter-cyclical topic to kick of a new year that everyone hopes will see the Covid-19 global pandemic kicked in the arse. That’s Australian lingo for vanquished, eradicated, snuffed out. Despite hopes that the Covid-19 respiratory virus will be globally defeated through a programme of vaccinations, it is unlikely to cover everyone who needs it, this year or even next. So let’s be informed by history.

My generation will recall the arrival of the polio immunisation team at their local primary school in the 1950s. ‘The Jab’ was administered to all children as part of a mandatory scheme to eradicate poliomyelitis (polio) from New Zealand (where I grew up). NZ, like Australia, had virus outbreaks in the 1930s, 40s and 50s.

Polio is a viral disease that affects the spinal cord and nervous system, primarily in children and adolescents. Globally, the disease has been 99% eradicated, after an immunisation programme started in 1955. Yet, as health authorities warn, even though the disease has not been seen in the US since 1988, it would take just one live case to be imported to re-start the viral cycle.

I warmed to this as a FOMM topic after reading a few chapters of Alan Alda’s charming biography ‘Never have your dog stuffed’. Alda, who contracted polio as a child in the 1940s recalled, “The country was in the throes of an epidemic. People were afraid to go to public swimming pools or theatres for fear of contagion.”

His parents utilised a controversial treatment advocated by Australian nurse, Sister Elizabeth Kenny. The treatment involved application of heat packs and manual stretching of limbs. Though controversial at the time, the Kenny methods were absorbed into what we now know as rehabilitation medicine.

Despite Alda’s graphic description of the painful application of heat packs, he credits the Kenny treatment with not developing paralysis or the characteristic withered leg common in polio victims.

Even though his doctor had declared him no longer contagious, young Alda had few visitors. He related how one child came to visit for a short while, sitting across the room on a wooden chair.

“Over the next couple of weeks, I thought about this, how kind he was to visit me. I also noticed he didn’t come back.”

Serious polio cases were often subjected to lengthy periods in an ‘iron lung’. An iron lung was a bed inside a metal box with a cushioned opening where the patient’s head protruded. The machine helped patients breathe mechanically until such time as the virus subsided and they could breathe on their own.

Survivors who were left with a withered leg were fitted with a caliper to help them walk. Serious cases ended up in a wheelchair.

It is estimated that about 30% of those affected by paralytic polio could be vulnerable to Post-Polio Syndrome in later life. Occurring about 30 years after the initial infection, PPS causes progressively worsening muscle weakness in limbs affected by the disease.

To demonstrate that polio (like Covid-19) can affect anyone, many famous people were affected by the disease:

Actor and humorist Michael Flanders (of the duo Flanders and Swan) spent much of his life in a wheelchair after contracting polio in 1942. As you can tell by this splendid parody of Mozart’s horn concerto, Flanders did not let polio dominate his life, short as it was (he died in 1975 aged 53). Given the dire nature of this topic, I recommend this performance of “Ill Wind” as light relief.  

My favourite songwriter, Joni Mitchell, developed polio and spent much of her childhood at home, where she discovered a talent for art and music. Joni developed her distinctive range of open tunings on guitar and dulcimer to compensate for an arm weakened by the disease. Polio might also explain her friendship with another Canadian songwriter, Neil Young, also a victim.

Australian songwriter Joy Mckean has worn a caliper since developing polio in childhood. In the documentary Slim and I, she tells the story of how she came to write Lights on the Hill, one of her husband Slim Dusty’s enduring songs. As Joy tells it, in the days when she and Slim criss-crossed the continent, the dip switch of most cars was located on the floor, to the left of the brake pedal. As her left leg was paralyzed, Joy had developed a method of moving her right leg across to dip the lights and back to the accelerator. It puts lines like these sharply into context:

These rough old hands are a-glued to the wheel
My eyes full of sand from the way they feel
And the lights comin’ over the hill are a-blindin’ me

Many other well-known Australians were struck down with polio as children, including the late media tycoon Kerry Packer, radio presenter John Laws and former Deputy PM Kim Beazley.

Packer was at boarding school in 1945, aged six, when, as he recalls, “one morning I got out of bed and just fell flat on my face.

I had polio and rheumatic fever and was sent straight down to Sydney. They put me in hospital there for about nine months in an iron lung.”

Although there has not been a locally acquired case in Australia since 1972, the country has a polio response plan in place. The ever-present risk of the disease being imported could trigger the plan. Although wild poliovirus-associated paralytic poliomyelitis has not been reported in Australia since 1977, an imported case was reported in a man who had traveled from Pakistan to Australia in 2007.

British new wave rocker Ian Drury was a polio survivor. The disease left him with a withered leg and arm and other disabilities. That did not stop him forming a band (The Blockheads) and penning pithy songs like Sex’n Drugs’n Rock’n Roll, Hit me with Your Rhythm Stick and Reasons to be Cheerful.

Drury, a disabled man with a poor opinion of the International Year of Disabled Persons, wrote Spasticus Autisticus in 1981. The  lyrics are directed at the campaign, which he saw as patronising and counter-productive.

So place your hard-earned peanuts in my tin
    And thank the Creator you’re not in the state I’m in
    So long have I been languished on the shelf
    I must give all proceedings to myself.”

This could be loosely adapted to a post-Covid scenario; someone lamenting how Covid has left them with weird after effects, or how the world’s way of dealing with the pandemic has dealt them a bitter economic blow.

It’s not hard to imagine Australian health authorities developing a long-term Covid response plan, as they did with polio.

As we know, all it takes is one case, imported from somewhere else, and the contagion starts all over again.

Happy New Year, then!

Lyric extracts from www.lyrics.com

Note from the Editor- don’t blame me – I said:  “Why don’t you write something fluffy for the start of the year?”

 

 

 

Septuagenarian motorbike dreams

motorbike-septeugenarian
She who also used to ride a motorbike, Mt Coot-tha, circa 1970

I’ve been having recurrent (and happy) motorbike dreams lately, a few days short of a significant birthday. I had no idea what septuagenarian meant. Also, as my spell-checker immediately informed me, I did not know how to spell the word either. A septuagenarian is a person between the ages of 70 and 79.

There’s a lot of this about, with the quintessential baby boomers (those born in the immediate post-war years (1946-1950), throwing big parties and telling people not to bring presents. Some have a late flirtation with their youth, buying a motorbike they couldn’t afford then or taking bucket list cruises to exotic climes.

We graduated from ‘sixty is the new fifty’ to feebly claiming that seventy is the new sixty. A few say I could pass for that, but they don’t see me in the morning, in the harsh light of the ensuite mirror.

Septuagenarianism causes one to reflect on mortality. Indeed, it makes one think of times when a premature exit was on the cards. In my case, this was a bad motorbike accident in 1969. If you fall off a motorbike at speed or hit something, you are always going to come off second-best.

A study by the Federal Department of Transport found that motorcyclists are 41 times more likely to sustain a serious injury than car occupants. Moreover, the study found that 10% of motorbike accident victims were not wearing crash helmets at the time.

Not that the statistics put people off riding motorbikes or indeed competing in motor racing, be it on dirt tracks or professional circuits. The Federal Chamber of Automotive Industries estimates there are one million registered motorcycles in Australia, and twice that number of off-road bikes.

My accident (it traumatises me still to recount) resulted in smashing both kneecaps, breaking my jaw and a lip laceration requiring 37 stitches. The latter was the least of my problems. I had both kneecaps removed and lay in a hospital bed with both legs in plaster for months. I became close to the pigeons roosting on the roof outside my narrow window. And I took up studying racing form to pass the time.

It is a good thing the brain does not retain the memory of pain. Let’s just say when the IRA decided on kneecapping as a form of punishment, they were inflicting great pain and future disability on their victims.

In those days, hospitals routinely doled out synthetic forms of morphine ‘PRN’ (Latin for as required – pro re nata). After several months, they weaned me off Omnipon (synthetic morphine) as my body was starting to crave the drug. Thus began a difficult period.

We can skip over the bad parts, which are chronicled in a highly romanticised song, Motorbike Dreams.

After getting out of hospital, I went to a (physical) rehab unit where daily therapy aimed to get my legs back to normal. As those who have had a patellectomy would know, full flexion is rare. I kneel with difficulty, cannot squat and take extra care to avoid having awkward tumbles. Apart from not having much of a head for heights, I avoid climbing ladders beyond the third step and have never been on the roof of our house.

Rehab and the sci-fi hallucination

Rehab was a hoot, after four months of being cooped up in a public hospital. It was only when I first got on crutches and struggled up the halls of the orthopaedic ward I stopped feeling sorry for myself. There in rooms by themselves or shared with others, was a coterie of ex-bikies, all of them in various degrees of pain and disability far worse than mine.

In rehab, I learned to play pool, always being defeated by a Vietnam vet whose left arm was frozen horizontally at chest height. It made the ideal place to rest a pool cue but was otherwise quite inconvenient.

This impish Polynesian chap, whose name now escapes me, decided one night we should all disobey the curfew and slip down the road to the pub. The rehab unit was located in a dodgy south Auckland suburb. But as Tipu (let’s call him that) said, “Otara’s not as bad as it’s painted, Bro.”

We had a great night out, temporarily forgetting the daily struggle to regain our version of normal fitness. I dimly recall a fabulously rowdy public bar rendition of Ten Guitars (New Zealand’s unofficial anthem).

In July, the surgeon who operated on my right leg decided to try manual manipulation, in a last-ditch effort to improve on 97 degrees. An ambulance came; I was taken back to hospital, given an injection of pethidine and then anaesthetised. I woke up in recovery 20 minutes later, with the surgeon shaking his head. The ambulance took me back to the rehab unit (I’d had a shot of pethidine, remember). The rehab crew were gathered in the rec room watched a flickering black and white RCA TV set. In my altered state it seemed like a bad sci-fi movie.

That’s one small step for a man,” said Neil Armstrong, as he stepped on to the surface of the moon, “One giant leap for mankind.”

‘Tipu, mate, is this for real?”

He grinned at my dilated pupils and patted me on the shoulder.

“It’s all fake mate, shot on a Hollywood film set.”

Maybe that’s when the rumour began?

By the way, if you didn’t know, there are (still) persistent myths about the Apollo 11 moon landing being faked. In 2008, the TV series Mythbusters came up with one of the more entertaining attempts to debunk the un-debunkable.

Later in ’69 I was discharged from rehab, having made four wooden collection bowls on a foot-operated lathe. It was a sad day, as we had all formed a bond forged by physical adversity.

I went back into the world, to a series of unsuitable jobs where my physical limitations became painfully obvious. The hardest one was steam-cleaning refrigerated railway wagons at 4am. It wasn’t a difficult job once you had clambered up into the wagon, but getting there was pretty problematic.

Just try going for a week without squatting when performing daily tasks and you will have some idea how I adapted to ‘bottom-drawer’ world. No complaints here, though. I got off lightly, as people who have had their kneecaps removed typically develop arthritis and other ailments as time wears on. As a physio once told me, “You’re a lucky lightweight”.

In my 40s, playing soccer with the kids at a birthday picnic, I did the quick about-turn and felt something go ‘pop’. Weeks of pain and hobbling later I ended up in the rooms of an orthopaedic surgeon. He examined the X-rays and asked me to perform a few basic knee movements.

“Is this coming good on its own, do you think?”

“Yeah, I think.”

“Well, forty year old knees with the surgeries you’d had, if it’s coming good, I’m not touching it.”

I give my knees a good talking to, most days, and keep them going with daily walking, weekly yoga and by avoiding the scourge of the over-60s (having a fall).

“Good and faithful servants,” I mentally tell my knees every morning, “Carry me through another day.”

I don’t ride motorbikes anymore, but I’ll never forget the free-wheeling euphoria of a downhill run. And I still have motorbike dreams.

 

 

 

 

 

 

 

 

The changing language of disability

The changing language of disability: I briefly met the deputy editor of The Conversation, Charis Palmer, in December, at the launch of the Yearbook. I handed her my card and told her my weekly blog had been running for three and a half years. I said I often quoted articles from The Conversation as I considered it an accurate and balanced source.

“Well don’t forget you can re-publish any of our articles, anytime,” she said before being descended upon by fans of The Conversation.

In just six years, The Conversation, with its evidence-based stories written by academics and curated by journalists, has gathered an audience of 5.2 million, extrapolated to 35 million via republication in other outlets. The following article by Professor Roly Sussex digs into the background of the language of disability. As he observes at one point, perhaps the pendulum of political correctness has swung too far the other way.

One example of this is the new Mental Health Act in Queensland, where psychiatric wards become ‘mental health units’, patients become ‘consumers’ and family members ‘carers’ or ‘loved ones.’ It has to be said that however stodgy the language sounds, it is an improvement on words like ‘inmates’.

Sad to say people today still use words like ‘moron,’ ‘retard,’ or the less insulting but now redundant deaf, dumb, blind or lame.

I hope you enjoy this erudite piece from Prof Roly Sussex, Queensland’s popular man of letters.

From ‘demented’ to ‘person with dementia’: how and why the language of disability changed

File 20171101 19867 1pqxw8c.jpg?ixlib=rb 1.1
The initial aim of political correctness, to establish non-hateful language was, and still is, admirable.
Nathan Anderson/Unsplash

Roland Sussex, The University of Queensland

In the second half of the 20th century, we came to accept that in certain cases we should avoid deliberately hurtful language. While many deride political correctness for going too far, its initial aim to establish non-hateful language was, and still is, admirable.

In the early 20th century, “moron” was a medical term for someone with a mental age of between eight and 12. “Mongol” was a person with Down syndrome, and also was indirectly a slur on people from Mongolia, some of whose features were supposed to resemble those with Down syndrome. “Retarded” described someone mentally, socially or physically less advanced than their chronological age.

We know these terms now primarily as pejoratives. “Mongol”, following the Australian tendency to form diminutives, has even given us “mong”, meaning someone who is stupid or behaves as such. Yet there is also a consensus such language is unacceptable. How did we get here?

The path to dignified language

In December 1948, the United Nations passed the Universal Declaration of Human Rights. Affirming the dignity of all humans, Article 1 of this landmark document states:

All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.

Article 2 goes on to specify this should apply

without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.

The declaration, prompted by the dehumanising events of the second world war, soon led to concerted initiatives to avoid hurtful and denigrating language.

Race and ethnicity was the first area to be addressed in Australia, where the philosophy of respect was enshrined in the Racial Discrimination Act of 1975. This included the currently controversial section 18C, which made it an offence to offend, insult, humiliate or intimidate someone else on the basis of race or nationality.


Read more – What is Section 18C and why do some politicians want it changed?


In the 1980s the scope was expanded in Australia to include gender and sexuality, with the legitimisation of terms like “queer”, and an increasing range of different kinds of sexuality now evident in the LGBTQI designations.

Words like ‘deaf’ and ‘blind’ are commonly used in negative ways.
from shutterstock.com

The third big change involved the language for people with disabilities, whether cognitive or physical. Here the English vocabulary was full of terms that mixed description with pejorative overtones.

People first

Words like “deaf”, “blind”, “dumb” and “lame” are not only descriptions of physical ability and disability, but are commonly used in negative ways. For instance, “deaf as a post”, “blind Freddie”.

We have now moved away from such language. Especially unacceptable are nouns like “retard” or adjectives like “demented”. In their place we have the principle of people first. The person and the disability are separated.

Instead of a phrase like “demented person” we have “person with dementia” or “person living with dementia”. The New South Wales Department of Ageing, Disability and Home Care has a list of such terms.

We should avoid terms that suggest deficit in a negative way, such as “disabled”, “invalid”, “retarded”, “handicap”, “spastic” and “cripple”. We should also avoid terms that explicitly specify limitation like “confined” (say, to a wheelchair). “Suffering from” is to be eschewed for the same reason, since it suggests the person is passive and incapable.


Read more – Redefining the (able) body: disabled performers make their presence felt at the Fringe


A number of paraphrases allow us to avoid sensitive terms. Instead of “blind” we have “visually impaired”. People are not “disabled” but “differently abled”.

Some of these terms can go too far and are effectively euphemisms because they sound overdone and excessively delicate, like “intellectually challenged”.

It is preferable to use language that doesn’t exclude people with these conditions from society. A good example of such inclusive language is “ambulant toilet”, often found in airports and public places, which simply indicates the toilet is suitable for anyone able to walk.

The Disability Discrimination Act 1992 consolidated these issues in Australian legislation, which now forms part of an expanding suite of anti-discrimination legislation both here and overseas.

Ambulant toilet is a good use of inclusive language.
shutterstock.com

Talking to someone with a disability

A general guideline for talking to someone with a certain condition is to ask that person how they wish to be described. In some cases, words like “deaf” have been reclaimed by bodies like the National Association of the Deaf in the US. The presence of the capital letter legitimises the term’s use, so long as it is done respectfully. In a similar way, various gender groups have reclaimed the word “queer”, and the fact they use it licenses others to do so too.

The requirement for respectful and considerate speech is not just a matter of good manners; it has teeth. Governments, education systems, companies, societies and other bodies often have guidelines for language use for people with disabilities.


Read more – Political correctness: its origins and the backlash against it


The US National Institutes of Health recommends “intellectually and developmentally disabled” or “IDD” for people with Down syndrome. Bodies like Dementia Australia have language recommendations.

Institutions and governments can apply a variety of sanctions to people who violate this principle in a persistent and hurtful way. These principles are now common in the English-speaking world and countries of the European Union, especially as enshrined in its Charter of Fundamental Rights.

The ConversationIn little more than a generation and half, we have become a more caring and inclusive society, and one much more aware of the importance of avoiding hurtful language. We don’t always get the expression right. But we are getting better at seeing the effect of what we say and write from the point of view of others.

Roland Sussex, Professor Emeritus, The University of Queensland

This article was originally published on The Conversation. Read the original article.