The following article Looks specifically at two recent (as in my lifetime) infectious disease outbreaks in Aotearoa New Zealand and what we have learnt and still need to learn and perhaps more specifically what we should do in light of such discoveries. As is often the case, marginalised communities are mostly invisible to the majority, even when they are the most impacted by epidemics such as Covid. HIV/Aids and the 1918 Flu.
The Delta variant of Covid reveals features of NZ society we prefer to keep hidden but perhaps the pandemic provides us with an opportunity to learn more about those features and what we can do to make society more equitable. Although Peter Davis discusses the situation as it specifically applies to Aotearoa New Zealand, I suspect similar opportunities exist in most parts of the world.
Perhaps the only terms that may need clarifying for those outside New Zealand is the term DHB (District Health Board). At an administrative level, NZ is divided into 20 health districts each administered by a board partly made up of elected representatives and partly by appointments from central government. Bulk funding for each board is provided by central government and each board determines how those funds should be spent. As Peter points out, only 5% of the expenditure of the Auckland DHB goes to primary health care and a paltry 0.15% goes to public health. Surely this is where we must in the first instance revise our priorities.
Published in The New Zealand Herald, 10th October 2021
Back in the late 1960s I was a young adult, still in my late teens, but unlike most of my peers I had no friends or social life – in fact I found interaction with typical teens and young adults perplexing and at times terrifying. I had no dreams or aspirations, but no regrets or fears either. I simply existed. My life was quite empty.
In hindsight, this seems to be to fate of many young autistic males, although it would take more than another forty years before I was to discover that I am autistic. I wasn’t unhappy, but being a social outcast, and knowing one is but not knowing why did create a longing that I vaguely felt somewhere within.
I have quite high levels of alexithymia and aphantasia. I lack an awareness of emotions in others and myself, and I am unable to conjure images in my mind. This is where music comes in. Some music causes me to feel what I assume to be emotions. Occasionally music may stimulate a vague mental image. Very rarely a piece of music may do both. This cover version of Mr Tambourine Man by Melanie (Safka) is one such piece.
I’m not sure exactly when the cover version of Mr Tambourine Man by The Byrds landed on the hit parade, but I guess it was around 1965 or 1966. I had no interest in it at the time, and still don’t. Then at the end of 1968 Melanie released her cover version on her album Born To Be. I definitely took notice of that version. I could feel the hair in the back of my neck rise, especially as she sings the last verse starting from “And take me disappearing through the smoke rings of my mind“,
It’s an imagery I can actually see, albeit as a black silhouette on a misty grey background or perhaps as a monochrome sand painting or perhaps as a slightly abstract pen and ink drawing. It’s difficult to describe as I can only see it while the song is being played. I can see the frozen leaves and the haunted frightened trees. I even sense the fear of those trees.
When I first heard Melanie sing the words “With all memory and fate driven deep beneath the waves let me forget about today until tomorrow“, I felt an instant connection. Perhaps I was a recognition that my life at that time was one of near solitude and I needed more. Whatever it was, there was a connection to the song and the singer in a way that I had never felt before. And still today, more than fifty years later, Melanie’s version of this Bob Dylan song moves me like no other does.
Enjoy!
Mr. Tambourine Man, sung by Melanie, composed by Bob Dylan
Lyrics to Mr Tambourine man composed by Bob Dylan
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
Though I know that evening's empire has returned into sand
Vanished from my hand
Left me blindly here to stand
But still not sleeping
My weariness amazes me, I'm branded on my feet
I have no one to meet
And the ancient empty street's too dead for dreaming
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
Take me on a trip upon your magic swirlin' ship
My senses have been stripped
My hands can't feel to grip
My toes too numb to step
Wait only for my boot heels to be wanderin'
I'm ready to go anywhere
I'm ready for to fade
Into my own parade
Cast your dancing spell my way
I promise to go under it
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
Though you might hear laughin', spinnin' swingin' madly across the sun
It's not aimed at anyone
It's just escapin' on the run
And but for the sky there are no fences facin'
And if you hear vague traces of skippin' reels of rhyme
To your tambourine in time
It's just a ragged clown behind
I wouldn't pay it any mind
It's just a shadow you're seein' that he's chasing
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
And take me disappearing through the smoke rings of my mind
Down the foggy ruins of time
Far past the frozen leaves
The haunted, frightened trees
Out to the windy beach
Far from the twisted reach
Of crazy sorrow
Yes, to dance beneath the diamond sky with one hand waving free
Silhouetted by the sea
Circled by the circus sands
With all memory and fate
Driven deep beneath the waves
Let me forget about today
Until tomorrow
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
For some reason, songs reflecting loss, sadness and/or regret affect me in ways most popular songs don’t. Songs about (romantic) love being found, lost or betrayed usually do little for me. The song Andy written by Don McGlashan and Harry Sinclair is perhaps one of the most powerful and moving songs I have heard about the loss of a sibling, both musically and lyrically.
The song was released in 1987, performed by the musical/theatrical duo Front Lawn (Don McGlashan and Harry Sinclair), and was ranked at 82 in the APRA Top 100 New Zealand Songs of All Time published in 2011.
Andy, who was almost five years older than Don McGlashan, died when Don was 15.
Lyrics to Andy
Let's take a walk along the beach before the tide comes in.
You sure missed one hell of a party last night.
I was just disappointed,
That the rest of the family won't even mention your name.
Yeah, I know you didn't mean to let me down last night.
Andy, don't keep your distance from me,
Andy, don't keep your distance from me.
So you didn't make it back in time for the birthday boy.
I know things can't stay the same year after year.
Take a look at this beach now,
There isn't much left of the place we knew when we were kids,
When we used to go diving from the rocks over there.
Andy, don't keep your distance from me,
Andy, don't keep your distance.
What'd you say we go up North Head?
Try to catch the sailing races?
Can you believe this place?
Well can you?
They're making money out of money here.
They're making buildings out of glass.
Their kids look like they stepped out of fashion magazines,
But none of it's going to last.
A man gets angry, but what can you do?
Don't know why I'm telling all this to you,
On Takapuna beach.
On Takapuna beach.
On Takapuna beach.
On Takapuna beach I can still see you.
I can let myself pretend you're still around.
I turned 28 last night.
If you were still alive you you'd be just short of 33.
If only you could see your hometown now.
Andy, don't keep your distance from me,
Andy, don't keep your distance from me.
While most of my readers have been living under various forms of covid-19 restrictions for upwards of eighteen months, for us Kiwis in Aotearoa New Zealand, and especially outside of Auckland it is a novel experience. Social distancing and masks have not been everyday parts of our lives until around 2 months ago when the delta variant finally succeeded in breaching our border security measures and is proving impossible to eradicate, unlike previous variants.
Mask wearing is now mandatory for people aged 12 and over when taking public transport or visiting businesses, and recommended when away from one’s home or “social bubble”. Personally, apart from yet being unable to find a means to avoid the fogging of my glasses, I find my stress level definitely rises to the point where it can’t be ignored after about 30 minutes of continuous mask wearing, and I need to remove it, even if only for a minute, to restore myself to something resembling normalcy. I can usually achieve that by retiring to the car or finding an out of the way park seat or equivalent where the mask can be briefly removed in safety.
However, that’s not the most serious downside to mask wearing. I have always had impaired hearing. I was diagnosed as having 70%-90% hearing loss when I was around 7 or 8. Normally I can get by reasonably well, and when a word or two can’t be clearly recognised, I can usually deduce it by context. It’s only just in the past week that it has really dawned on me how reliant I am on lip reading as an essential component of my ability to understand the spoken word.
I’ve recently had several occasions where it has been necessary to converse with a shop assistant while making a purchase. In one case it was a quiet environment but I was unable to recognise even half the words spoken by the assistant. Often I was unable to understand even the gist of what he said. By the end of the transaction I suspect he was just as frustrated as I was about the slow progress of our conversation. I found the entire process embarrassing and somewhat humiliating.
Later in the week, I visited a somewhat noiser shop where I had gone to pick up some items I had bought and paid for online. Sure I could have had them delivered, but the delivery would have cost more than the products. I’m not a penny pincher, but we do have a fixed and somewhat limited budget to live on. In theory I should have been in and out of the shop inside of a minute, but it was not to be. It didn’t help that the online instructions for collecting online purchases were incorrect for the local branch. In fact it may have been less confusing if there had been no instructions at all.
After waiting at the counter under a sign reading “Collect online purchases here” and seemingly being ignored, I sought out a shop assistant and explained why I was there. To cut a long story short, it took over half an hour to collect my purchase and only then because I finally resorted to seeking yes or no replies or asking them to point or make a specific gesture order for them to communicate with me. At no time did it occur to them to initiate non-spoken communication. I found I had to give specific instructions. Even when I discovered that where I was waiting for my pickup is no longer applicable, and then asking where I should go, no one thought to point in the appropriate direction until I specifically asked them to point with their arm/hand/finger in which direction I should go.
I’m not sure what sort of privileged lives the young people working in that shop have “endured”, but it was apparent to me that they wouldn’t understand the irony of directing a wheelchair bound person to take the stairs to a different floor or instructing a blind person to read a sign painted on the wall. I would have thought that people with disabilities are encountered often enough that most non-disabled folk would have some level of understanding or empathy. Apparently not.
Come to think of it, while I don’t consider being autistic as being disabled, some of the hyposensitivities and hypersensitivities that result from being autistic can be made disabling by a lack of empathy, and sometimes by antagonism in the 99% of the population who are neurotypical. So in hindsight I really shouldn’t be surprised by the lack of understanding or empathy I have received over the past week or so due to no longer being able to augment spoken conversation by lip reading.
Perhaps I am on more common ground with neurotypicals when it come to reading facial expressions of those who are masked. I’ve heard and read many complaints about how much more likely it is to misunderstand someone or be misunderstood when masks cover so much of the face. I’ve queried a few acquaintances about this, and they tell me that it does reduce the amount of non-verbal communication they receive. The amount of perceived loss seems to vary considerably. When pressed, it’s varied from “some” to “heaps” (a lot).
Most people don’t think about how much body language and facial expressions contribute to spoken communication until it’s brought to their attention or they find it missing from others or they realise their own intentions are not always fully understood. The necessity to wear masks is bringing the significance of non-verbal forms of communication to the attention of some of the more socially aware folk.
My own (admittedly very anecdotal) investigation suggests that people rely on the eyes as much, if not more, than other facial expressions. So while a mask can reduce the amount of non-verbal information received, it doesn’t eliminate it. If anyone has tried the Mind in the eye test, they will realise how much most people can read from looking at the eyes alone. So spare a moment to consider the situation I now find myself in.
I do very poorly when reading facial expressions. I can recognise a few basic facial expressions, but if I rely solely on the eyes I’m lost. The average for adults taking the Mind in the eye test is 26 out of a possible score of 36, but varies from 17 to 35. Women average slightly higher than men. For autistics, the average is 22. I’ve tried the test many times, and the best I have ever done is 17 out of the possible score of 36. Typically I hover around the score that might result from random selection – a one in four chance of getting the correct answer for any given question – 9 out of 36. In other words, I haven’t a clue how to read eyes.
It is becoming clear to me that what emotions I can read from the face depend almost entirely on the mouth and now that they are effectively hidden behind masks, I am blind to emotions being expressed unless someone describes their emotion(s) in words. I’m really not sure how I can effectively remedy the the losses I now realise I am faced with, as I don’t see the likelihood of masks being done away with for some considerable time, if at all.
I’ve spent seventy years learning how to limit social faux pas, and more importantly, how to recognise them when they occur so that I can take remedial action. I can foresee that mask wearing will set me back decades. Perhaps it’s time I seriously thought about becoming a hermit as a full time occupation.
I, and I suspect many others on the autism spectrum, have found alternative forms of communications forced on society by the current pandemic less threatening, more comfortable and less open to miscommunication (from my perspective) than the usual face-to-face forms of communication that most neurotypical people engage in. As the post I’ve linked to below discusses, the way autistic people typically communicate can be advantageous even to those not on the spectrum, especially in the “new normal” that’s likely to be around for some considerable time.
The other day I was at work and was hit by a revelation. It had been nagging at me for a while – I could feel that something had shifted. But I never would have predicted that I would be facing the world of work with a social advantage due to my autism. I’ve had […]
I intend to publish a music themed blog post on Mondays, hence the title. I doubt that it will be every Monday – I want it to be a pleasure, not a chore. We’ll see what eventuates. Here is the first Musical Monday post.
Parihaka
Tomorrow, the 5th of November marks the 140th anniversary of the invasion of Parihaka by government troops, armed constabulary and militia volunteers. It’s a shameful blot on our history and shouldn’t be forgotten. It still seems that many, perhaps most, Kiwis are unaware of the event . Is Aotearoa New Zealand the only nation where the teaching of its history is considered optional?
That a community founded on Christian pacifist ideals should be destroyed because it was an impediment to the goals of European settlers and the government of the day speaks volumes to the attitude of most settlers at that time. Parihaka was a large town (for that era in NZ), thriving, modern (the first town in NZ with street lighting, the second with pumped water reticulation), very open, the centre for a large, mainly Māori, community. And that seems to be it’s major “problem”. It wasn’t “for the settlers, by the settlers, of the settlers, and to hell with the Māori”.
I learnt of Parihaka’s history as a child in the mid to late 1950s. I guess I was seven or eight at the time, perhap nine. My sources were from my school teacher, a Pākehā with a keen history of New Zealand, and An elderly Māori Woman who lived on the section (property) behind ours. She would have been well into her nineties, perhaps older, and had lived through the Taranaki Land Wars – another shameful blot on our history that preceded the incident at Parihaka, and many ways a precursor of what was to come.
Wikipedia provides a reasonably accurate although impersonal story of Parihaka, but fails to capture the “essence” of the story as I heard it, especially from our neighbour. After some sixty-five years, my memory of the details I learnt at that time are incomplete at best, but I do remember what I felt. It’s often claimed that autistic people are unable to be empathetic, but I can assure you that they way I heard the story told, it was as though I had personally lived in Parihaka in the months and years before and after the the destruction of that community.
WordPress, in its “wisdom” will not allow me to embed and publish my preferred version music video of Parihaka. I can embed it in draft mode but not publish it. It’s a 1989 music video performed by the writer/composer, Tim Finn, accompanied by The Herbs. You can view it here:
I’ve also embedded a Youtube video clip below the lyrics for the benefit of those who prefer to remain on this WordPress page. There seems to be a few minor changes in the lyrics, including the dropping of the name of one of the Parihaka leaders, Tohu, pepper has become salt, and dreamed has become watched, but the essential message remains the same.
Lyrics to Parihaka
My friend, My friend, I hate to see you suffer,
Events conspire to bring us to our knees,
My friend, my friend, you've taken this the wrong way,
Rise up, defend yourself, never give in,
Look to the sky, the spirit of Te Whiti,
The endless tide is murmuring his name.
Tohu, Te Whiti will never be defeated,
And even at the darkest hour,
Their presence will remain.
I'll sing to you the song of Parihaka.
Te Whiti he used the language of the spirit,
Then stood accused, the madman and his dream,
They saw the train go roaring through the tunnel,
They heard the voice travel on the magic wire,
But they loved the silence of the river,
They dreamed the dog pissed on the cannon's wheel.
Tohu, Te Whiti they'll never be defeated,
Not even at the darkest hour,
Their presence will remain.
I'll sing for you the song of Parihaka.
One day you'll know the truth,
They can't pull out the roots,
Come and take me home,
To weep for my lost brother.
They gather still, the clouds of Taranaki,
His children's children wearing the white plume,
So take me for the sins of these sad islands,
The wave still breaks on the rock of Rouhotu.
And when you taste the pepper that's on your pudding,
And when you taste the sugar in your soup,
Tohu, Te Whiti, they'll never be defeated,
Even at the darkest hour,
Their presence will remain,
I'll sing for you the song of Parihaka,
Come to Parihaka,
Weep for my lost brother,
The spirit of nonviolence,
Has come to fill the silence,
Come to Parihaka.
Parihaka – Tim Finn with The Herbs
It’s kind of ironic that we Kiwis commemorate Guy Fawkes Day as enthusiastically as the English, perhaps more so, but most of us fail to realise that we have something more significant to remember on that date – the courage of all those at Parihaka who in the face of hatred and violence stood firm to their principles of peace and love. Even now, more than a hundred years later, we are yet to truly understand that might doesn’t mean right. It’s too important to forget. Parihaka is a powerful reminder.
Another Spectrum 