On May 30 #ArmsDownNZ began to trend on Twitter as we learned that NZ Police’s trial Armed Response Team had not been reserved for incidents that posed “significant risk”, but had largely been doing normal Police work.

This news landed just 5 days after the horrifying murder of George Floyd at the hands of American Police, captured on video and broadcast around the world. Yet another abhorrent demonstration of racism and Police brutality against Black people in America. (Please seek out writing from Black people in America on this topic, I am here to write about my own experiences not theirs.)

There is a view of New Zealand as an idyllic island nation, remote and pristine, full of hope and promise, separate from the troubles of the world. Safe – not even the wildlife will kill you.

This idea of New Zealand as a safe land of opportunity is what brought many colonial settlers here in the first place, and what current residents of our country often turn to for comfort when there are problems overseas – “I’m so glad I live in New Zealand! That doesn’t happen here”.

George Floyd’s murder is another traumatic overseas event we are trying to make sense of. The horror of watching a man die beneath the unrelenting knee of a law enforcement officer induces us to seek out comfort and to make ourselves feel safe.

The revelation that our own Police force could soon be carrying out their normal Policing duties while also carrying firearms should rip away the comfort of “it wouldn’t happen here”.

More armed Police will lead to more people killed by Police, and those people are more likely to be brown. Research from JustSpeak released in February 2020 highlights racism within the NZ justice system.

Our research shows that when first encountering police, Māori who have had no prior contact with the justice system are 1.8 times at risk of a police proceeding and seven times  more likely to be charged by Police, than Europeans. When someone is charged they are more likely to end up trapped in the justice system. Their chance of re-offending increases with negative outcomes for whānau and communities. More than half of Aotearoa’s prison population is Māori, despite Māori making up only 15% of the general population.

Excerpt from JustSpeak website

If the idea of New Zealand as a safe place is one that is dear to you, you must take action to ensure that it’s true. armsdown.nz has more information and resources for doing this, speaking with those around you about this issue is a really good start.

I wrote the following to haveyoursay@police.govt.nz 3 days ago. I haven’t had any response.

For consideration in regards to the Police Armed Response Team trial in New Zealand.

The news of this trial being undertaken at all was confronting for me as a Māori New Zealander concerned with the rates at which Māori people are involved with the Police in our country. 

I fear that these high numbers become a self fulfilling prophecy - belief that Māori are our highest offenders leads to greater suspicion, investigation and involvement in Māori lives by the Police.

Firearms are lethal weapons and I am extremely uncomfortable with any person in our country being empowered to aim a lethal weapon at another human being for any reason. 

The justifications for the trial were made, concerns were raised, and the trial has been run. I believe the trial has confirmed that arms are not necessary in day-to-day law enforcement in New Zealand and that our country would feel safer without firearms being guaranteed as a factor in any confrontation involving the police. I believe an increase in weaponry on the part of the Police will increase fear and the panic response from suspects who may escalate their own reactions leading to more use of weapons in confrontations. 

Allowing firearms to be on our streets ensures more people will die by shooting. 

I think a more impactful statement to the public would be to engender trust - largely the people of New Zealand do care for each other, why not continue to generally trust the people of this country? 

Tasers are sufficient day to day weapons for the assistance of subduing offenders if necessary. Situations which would be argued to require firearms should be deferred or stalled until a special unit can be involved, disengage if necessary to protect officers. 

The solution won’t be mine or come from me, but I did not want to remain silent when this trial seems to have confirmed my worst fears - that police would be carrying arms more often, have the opportunity to use them more often, and that the targets would most likely be minority cultures like my own.

Please do not carry forward to arming officers permanently in New Zealand. 

Anthea Whittle

Digital Inclusion and Rural Aotearoa

The trials of connectivity in “remote” New Zealand.

Our home was connected to the internet for the first time in 1998, when Dad brought home a Gateway PC and my aunty set up our dial-up connection.

I was ten. I loved messing around with computers, trying things out to see what I could do – even just typing into a basic word processor was exciting. In 1998, our connectivity was on a par with anyone else connected to the internet, and it’s been a race to the bottom of the hill since then.

Ironic, since we live atop a hill with an enviable view across Tikapa Moana (the Hauraki Gulf). I can see the lights of the Sky Tower in Tamaki Makaurau (Auckland) at night, and all the way north to Hauturu (Little Barrier Island) on a good day.

Sunset from the Whittle family home in Papa Aroha
View from our home at sunset this week.

In the new millenium, Telecom (now Spark) extended 3G service out to our area and we were able to buy a gadget with a SIM card which would allow us to create a WiFi network connected to the internet via 3G – which was patchy at best.

20 years after we first connected via dial-up it was still necessary to maintain that connection. Mum runs a small business and needs a reliable connection to respond to her customers. The last time I used dial up was in 2018.

In 2010, under a National Government, Steven Joyce announced the Rural Broadband Initiative, recognising that connectivity is “important” for modern life and endeavouring to improve broadband access for rural New Zealanders. Of course, Aotearoa is “geographically challenging” and so someone would always be left out. The Centre for Public Impact shared some analysis on progress on the RBI in 2016.

Our home is north of Coromandel town, in a tiny settlement called Papa Aroha between Colville in the north (pop. 1,485 2018 census) and historic Coromandel township (pop. 1,743 2018 census) a 15 minute drive south. We aren’t big enough to be reported on as a community ourselves.

In 2011 the RBI objective was to “improve coverage of fast broadband to enable 80% of rural households and businesses to access services of 5Mbps or better, and the remaining 20% to achieve speeds of at least 1Mbps”. And, to “connect 97% of schools to fibre enabling speeds of at least 100Mbps with the remaining remote schools able to achieve speeds of at least 10Mbps”. (Source: P9, from the Commerce Commission). UFB1 was completed early and on budget, according to a statement from Labour Minister Kris Faafoi in November 2019.

As small as our settlement in Papa Aroha is, we have had low expectations of connectivity and have always known we’d fall outside of thresholds for a longer period of time than the rest of the country.

In 2018 (yes, the same year we still listened to our dial-up modem sing the song of connectivity…) Ministers Kris Faafoi and Shane Jones announced the Rural Broadband Initiative Phase Two/Mobile Black Spots Fund to take coverage to 99.8% of the population (source). That excludes just 0.02% of the entire country.

This latest extension is set to be finished in 2022. Crown Fibre Holdings/Crown Infrastructure Partners who manage the 1.7 billion investment to realise the RBI/RBI2/MBSF and UFB (Ultra Fast Broadband) initiatives state fibre-to-the-premise for 87% of New Zealanders by 2022.

Text reads: "The Government’s objective is to provide fibre-to-the-premise (FTTP) to 87% of New Zealanders by 2022. Under the UFB Programme, FTTP will be deployed to 1.8 million households and businesses in 390 cities and towns. The RBI2/MBSF programme will deliver improved rural broadband to more than 74,000 rural households and businesses and new mobile coverage for around 1,000 kilometres of state highways and more than 100 tourist destinations. The RBI2/MBSF programme will be substantially complete by 2021."
Screengrab from Crown Infrastructure Partners’ website, click for source.

On the 29th of April 2020, Minister Kris Faafoi announced further investment in the rural network via the Ultra Fast Broadband Initiative (UFB), which is different to the Rural Broadband Initiative (RBI). Though the coverage maps on the Crown Infrastructure Partners website don’t have any additional coverage in our area.

The best we can currently do is satellite service provided by Gulf Internet. This came about when fed-up local businesses and residents looked at how other remote areas were connected, and found Waiheke Wireless provided by Gulf internet. Land access was provided by locals for a satellite tower to be installed, and those of us with line of sight to the tower signed up. On a good day, we can get connection speeds around 15-18Mbps down and up.

Gulf Internet do their best, but since I’ve relocated to Papa Aroha from the city during the COVID-19 response, I’ve been experiencing first-hand unexpected days without any connection whatsoever, and unexpected drops of connection during work calls and during anything else we might be doing.

When we struggle, calls to our provider are answered but not always followed up. We apologise to our employers or clients, cross our fingers and hope, or take a drive with our cellphones to find 4G reception and hotspot our laptops.

We are grateful for the efforts of Gulf Internet and some kind people there, especially during the current pressures, but we should have been elevated from this situation years ago with the improvement of national infrastructure circa 2011 – not necessarily via fibre, but it should not have fallen on locals to instigate a satellite tower.

The local schools in Coromandel, Harataunga (Kennedy Bay), and Colville were all connected as part of the first cut at the RBI, with the fibre laid not being linked back to Coromandel through Papa Aroha which would service our community.

Rough map showing where the nearest schools to Papa Aroha are, and the Papa Aroha settlement
My rough drawing on a map (source: openstreetmap.org) showing where our nearest schools are, the fibre connection run under the RBI phase 1, and where the Papa Aroha settlement is.

RBI2 new coverage maps from Crown Infrastructure Partners show new connections nearest to us in Whangapoua (about 30km away), Kuaotunu, and Matarangi (all between Coromandel and Whitianga), and north of us, two tourism locations: Coromandel Coastal Walkway and Port Charles.

At this point, Papa Aroha residents (who are also business owners) and visitors to our area are all deemed less of a priority for stable connectivity than being able to connect while taking a scenic walk.

Excerpt from CIS New Coverage Map showing new connection points by 2022.
Excerpt from CIP New Coverage Map showing new connection points in our area by 2022. Click image for full map.

Of course, the tourism industry is essential to the economy of Coromandel as our largest industry with 16.6% of GDP in 2019, and I love a good travel pic on Instagram as much as the next millenial. It would just be great to be able to access that reliably from home at the same standard as the rest of the country and its manuhiri (guests), if not the rest of the world.

Since COVID-19 is set to choke the tourism industry for international guests at least, reliable connectivity is essential for economic development (and social development, and so much else) in all areas of our country. This is not a piece on why the internet is important, but on our own experiences trying to be reliably connected in our rural area. There seem to be many other rural New Zealanders with a similar tale.

Internet NZ are seizing the example of the impact of the COVID-19 pandemic on New Zealanders with regard to internet access, to highlight the importance of digital inclusion.

Their five point plan for digital inclusion covers more than just the infrastructure limitations that my family experiences, it takes the necessary steps to consider the education, devices and financial support that are also real current barriers to people in Aotearoa getting online. We will be adding our business names in support of their plan, please add yours.

With the most recent announcement of further investment, perhaps our community might finally be considered for infrastructure, but it looks like we are set to be part of the 0.02% of New Zealanders left in the “too hard” kete.

If you’re reading from a stable connection, take a moment to appreciate it and know that too many fellow Kiwi’s don’t yet enjoy that same privilege.

The last time I nearly died

Anyone else with a chronic illness will know what it’s like to ride the merry-go-round of medical professionals; and this year I was referred to a new neurologist, who sent me for updated head MRI scans. It’s been four years since I was initially diagnosed with IIH, so an updated image would help her to understand the current situation.

Having had an MRI before, I knew the drill – super attractive smock, lie in a noisy machine. But this time, the specialists chose to use gadolinium dye to improve the images to be taken. I had signed consent for this, having no known reasons that it could be a problem.

Most of the images of my head were taken before the technician advised me that they were administering the dye (via an IV lure that had been placed before I was put in the MRI machine). Within two minutes of the dye being dispatched, I started to feel hot – I can still recall the prickling heat across my chest as I said to the technician “ah, I think something’s up”.

I had an allergic reaction to the contrast dye, which was such a strange experience to me as someone who experiences a lot of pain. I didn’t feel pain, but a rush of other symptoms that the clinical team recognised – I had a shot of adrenaline at the MRI facility and another before the paramedics shuttled me off to the Emergency Department at Auckland Hospital. I really didn’t think things were that bad – I was shaking violently from the adrenaline but not really in pain – so it was a shock to get to the ED and hear “straight to resus” as if I was on Shortland Street!

After the doctors had done their thing and I was in observation recovering, one of the radiologists brought me my belongings and told me that they had managed to get a good range of images of my head prior to my reaction, and it did look like there had been some improvement in the areas of pressure in my brain (which had led to my IIH diagnosis last time).

When I next met with my neurologist, she explained that after analysis of the images, she was lifting my diagnosis of IIH. So I don’t have IIH anymore, just like that. But because I do still have headache constantly and sometimes to a debilitating degree, I got a new label. Chronic Daily Headache with Migrainous Features. Well, that’s a mouthful to say, but most people at least understand what it means – as opposed to my previous label.

Since I don’t have IIH anymore, I also don’t have to take Acetozolamide anymore. Acetozolamide is a diuretic, used to prevent altitude sickness as well as some types of seizures and also a form of glaucoma. The theory in it’s use for IIH as I understand it, is to help prevent the buildup of spinal fluid which was putting pressure on my brain. I don’t know if it ever helped in that way for me, but it definitely caused a litany of side effects especially when I first started taking it four years ago. Pins and needles in my hands and feet, and an increase in the frequency of heart palpitations I get sometimes with anxiety. Since coming off Acetozolomide though, I have also come out of the fog of severe lethargy that was often keeping me from being able to do much more than shower in a single day.

So, while my pain is still present and sometimes ridiculously high, I have more energy and have been able to actually DO THINGS again. Well, not everything, but a lot more than I was accomplishing while on Acetozolamide. I went on holiday with my parents to Fiji and wasn’t the one to bail out part way through our little rainforest hike; I snorkelled and could dive deep and stay down, and I met a manta ray and decided I could probably SCUBA dive again – so I’m looking forward to that.

I’m still not great, though, with daily pain and some annoying triggers (some sound, light, smell can all make things worse) so I’m on a new course of trials. I’m trialling Botox, due for my second administration next week. 31 tiny injections of botox in my scalp and forehead, which helps some people with headaches like mine but not all people. Apparently patients notice improvement within the period of two treatments, which happen three months apart. I don’t know yet if it’s helping, but it’s certainly meant my killer eyebrow raising skills are compromised… I have to try really hard to frown too but apparently people still know when I’m mad!

At the moment, I’m doing more. And perhaps leaning on my painkillers a little too often in order to achieve that. There are a raft of other drugs I can still try, even after six years of trying to sort this all out, but they still know so little about headaches in general.

Doing more does mean doing work too, and a dear friend has brought me into a project which doesn’t require a huge workload from me. For me, it’s a bit of a trial on whether I can cope – physically as well as mentally and I’m hopeful it will go well. I’ll probably have to report back on that one as it happens.

For now, I’m really grateful I had an MRI that apparently nearly killed me, because since, it feels a lot lot more like I’m actually living again.

Moving to WordPress

WordPress was a thing, ten years ago when I started my blog. But I chose Tumblr because it was easy and I liked the built-in community that came with it, a context for my content as I posted it.

I also was more prone to post just a photo, or to share some content I liked – song, video, site or someone else’s media. In more recent times though, I’ve preferred to post my own content and most of it written. I’ve disengaged with the community there as my dashboard became too busy to keep up with – in a very Twitter-like fashion.

Since the change in my content posting habits, WordPress became the more obvious platform for my blog, but I just didn’t want to go through the motions of moving. I also felt quite loyal to Tumblr through “thick and thin” shall we say, as it’s been a tumultuous time for the site since their acquisition.

I made friends through Tumblr, we had an Auckland meet-up (which arguably was just a bunch of us web-industry folk plus a few), I discovered some really great creators and bought their stuff. People even read my stuff, and talked to me about it!

Clearly, my content isn’t porn. But Tumblr’s announcement yesterday that they plan to become a “better, more positive Tumblr” basically through censorship just doesn’t ring true for me. This article from EFF, “Dear Tumblr: Banning “Adult Content” Won’t Make Your Site Better But It Will Harm Sex-Positive Communities” does an excellent job of explaining why.

Even though I no longer engage with the community on Tumblr anyway, and my own content won’t be affected, I’m particularly concerned by the erasure of positive content and particularly of Queer content. It’s early days for the policy and it’s algorithm, but the fact that rainbow content is flagged at all is sufficient to have made me uncomfortable enough to want to stand by my values and move house.

So things in my new home are ugly.

I’ve gone with hosted WordPress, torn some hair out over DNS reconfiguration, and my content import is inelegant AF (photos are within body content as opposed to “main image” content, so previews look pants, and many posts don’t have titles).

But I believe in a free, open, representative internet and a few hours of work to migrate away from a platform that doesn’t share these values is worth it.

So my domain is the same, and I’ll be posting henceforth into the void at antheawhittle.com. RIP Tumblr.

Image of this blog's homepage while it lived on the tumblr platform.
Screenshot before the move.

How Colour Therapy gave me M.E

It’s been five years since I was so sick physically and mentally that I resigned my full time job. I have a neurologist’s diagnosis of Idiopathic Intracranial Hypertension; but if anything, despite all the best efforts that my support network and I have put into getting “better” I keep having setbacks and overall decline.

Medical intervention surgically, with medications plus heeding the diet and lifestyle recommendations seem to help, some seem to hinder. There comes a point where you wonder if an experience is a symptom or a side effect.

Without dwelling on my symptoms, I am best frenemies with my bed. 

I spend most of my time here, and when I have a low enough pain score I spend the energy I have tending to life – housework, errands for medication and groceries and such. I’m really damn thrilled when I can manage to go out and do things – like go overseas for a family member’s wedding or over a few suburbs for a Christmas party.

I’m on the “Jobseekers” benefit with a sickness deferral, and have been since the first quarter of this year. I have screeds of medication, doctors, tests, results and information to keep track of, and I’m losing my mind.

I’ve talked about Brain Fog before, but now daily I forget so many things – what’s on the shopping list, when (or if) I took my medication, what words I want to speak when forming a sentence. I end up stumbling and mumbling over words to strangers and embarrassing myself.

My sister needed me to collect her from work yesterday, immediately as she works with kids and wasn’t well. While I was capable of doing that, I had forgotten where her work was – again. She reminded me. I forgot while getting ready to leave the house what I was leaving the house for. She is lucky that I made it there (after another reminder of the address) at all!

There are strategies I use that all forgetful people would use, write everything down (on my phone, lest I forget the paper), tell someone else, make an association. I get my medication measured for me in a dispensary pack where I take a little sachet of pills morning and night, they have dates on them.

I’m really sad about memories, like memories of experiences with my partner, who I’ve been with not yet a year.  He recounts memories to me and sometimes all I can manage is “that sounds like something I’d do”, while casting about in the fog for any scrap of a trace of the actual experience. I’m sad I don’t have those things to revisit when I am not well, but also that I can’t share in reminiscing with him, but who else too? My other family and friends? I desperately don’t want to forget them, you.

When your mind blanks repeatedly throughout your day, it gets frightening.

Will this get worse? It is getting worse. If I can’t remember how I manage my appointments and my medication and my tests and things, who would be able to do so? I can still drive, go to appointments and things alone. But what if my ability lessens further? It’s hard to think about.

Medical treatment is slow. Not just because of “The System”, but because I can’t follow up and make appointments for myself sometimes for weeks – I’m too sick, too tired, trying to take part in the business of living. I might feel good at 3am and ready to follow everything up, but that’s not when medical establishments want to know me. I slow it down, as everything is slowed down for me now.

Alongside the medical approach, is the alternative approach. Those dreaded “have you tried…” pieces of advice, meant with the greatest love but often received with the meekest resigned sadness.

Colour Therapy involves being “dowsed” by a practitioner who runs through a catalogue of colours associated with malaise – illness, infection but not injury. They pick out the colours associated with what they feel affects you, and you are then exposed to the light frequency emitted by those colours as therapy. I’m not here to explain colour therapy though, just it’s impact on me.

With no more information than the sight of me on an early summer day, when my pain was low and my energy and mood high, and that I have “headaches”, the practitioner pulled out 19 major initial areas I needed treatment.

With each colour she pulled came a label and the areas affected in the body or the symptoms I experienced. I don’t have the laundry list and I don’t want to focus on my symptoms but the dowsing was Spot. On. I have no idea how, based on the little information she had, she was able to pinpoint the specific things that are issues for me.

After three days, including two nights, the more senior practitioner checked my progress, and delivered their diagnosis. Myalgic Encephalomyelitis (ME).

The fact sheet was handed over with sympathy and care, but I know ME. In fact, my medical doctors have vaguely started down the path of ME/CFS (Chronic Fatigue Syndrome) as a possible diagnosis for me.

I am a scientific believer but value care of the spirit too; I typically would stick to traditional medical practice, particularly for a diagnosis. But after much thought I’ve decided to accept the diagnosis of ME/CFS, and pursue a medical diagnosis too.

In deciding to accept this label, I particularly acknowledge how this particular condition is very very hard to diagnose. However, the symptoms I live with everyday are described in almost comforting familiarity by ME. More so than even my medical diagnosis of IIH – where I don’t actually experience some of the symptoms, and I definitely don’t respond to treatments like lumbar puncture to reduce CSF pressure on my brain.

So now, I have a new path on the same journey and for me it feels like a positive one though it’s scary. Pursuing a medical diagnosis of ME/CFS will probably include a loooooot of tests.

It also means sharing with those around me my experience and my needs for support or just needs in accommodation as an ill person, which I already have been doing for some time. The biggest change is really an internal one, but with the effects on my brain – including cognitive impairment, I’m really scared about what is to come for me.

If you noticed I put “better” in quotation marks earlier, it’s because I’ve also accepted that there is no such thing as a full recovery from this, I won’t get “better” like you would from a common cold or a scratch.

I will get better in that I’ll be better understood, better equipped, and hopefully better able to continue living a fulfilling life and contributing to the world with my existence. There is hope, even while I watch my peers achieve goals I previously had for myself, I can look forward to new ones that suit me and my abilities better.

How you can help me

I’ve been asked “how can I help?” and honestly, if you’re not already someone I call on then the best way to help if you can, is with money.

I hate to say it. We don’t say it. I don’t want to say it, but I say it as much for me as for any other person limited in their earning capacity.

I don’t expect people to give me money, I have financial support through WINZ that goes to some extent and the privilege of supportive family and friends. I hate to be at this point because I can’t express my thanks, appreciation and generosity as I used to, with gifts of food or other thoughtful tokens. I could go on.

You can commission me to write – even tell me you’ll pay me to write another blog post right here, about anything you like; or for anywhere that fits within my ethics and kaupapa. I am hoping to get more paid writing opportunities like my recent piece for Radio New Zealand, so sharing my writing also helps!

Please contact me if you want to commission me, I want to earn some money.

Thanks so much for reading and your support!


Find out more about Myalgic Encephalomyelitis: https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/

About my diagnosis for IIH, “The Problem With My Head” http://antheawhittle.com/post/104958680107/the-problem-with-my-head