A Different Light – 14 December 2019 – “As we enter the 20s, relish and remember the good times”

A Different Light – 14 December 2019

It’s not only the end of a year- it’s the of a decade. The acceleration of change has been bowel shattering in some departments and pedestrian in others. Remember when the iPad got launched in the Autumn of 2010. How shiny and mercurial it seemed, fluidly morphing from landscape to portrait display, with a turn of the wrist. Now it almost seems old school. Back then no one would have imagined that Donald Trump would be President of America. On the other hand, steps towards combating global warming seem as glacial as the tell-tale thawing of Antarctica.  2019 has had its fair share of ups and downs, heroes and villains- with events and issues that have offered up endless pros and cons, to remind us that things are rarely black and white but a wide array of grey on grey. So let’s recap 2019 from ‘A Different Light’.

At the start of the year an assertive Takapuna local took a video of some Irish tourists and their belligerent behaviour, after she suggested they pick up their rubbish from the beach, shooting them instant infamy. For the rest of the week story after story about the bombastic bunch broke in the news.  At the time I thought they would be notorious in New Zealand as the “Irish Tourists” for some time to come.  And yes this particularly   feral memory is still easily retrieved.

We always forget how hot February is. It’s predicted to get hotter with the rest of the globe. What wasn’t so predictable in February was cyclone Oma that had weather forecasters vacillating over whether or not Oma would hit Northland on the upcoming Saturday. It just so happened that we (Tiaho Trust), were holding our annual Ruakaka Surf Day.  This is a day where people with disabilities get to have a go at surfing.  Get to catch a wave.  Get to feel like a million bucks. I bottled it and postponed the day.  The cyclone was a fizzer. Not even a memory.

March was a horror show. The sheer enormity of the March massacre kept growing by the hour. A community reeling and our society reflecting on how this could have happened in New Zealand. At the same time acts of generosity, love and support poured out.

What I have found particularly extraordinary was a story that about Farid Ahmed, a man with paraplegia, who wheeled himself out the Al Noor mosque, after the massacre, said he could simply not hate the shooter.  This is a dark memory that won’t be dissipating any time soon.

Global warming and climate change featured throughout the year. April was unseasonal with hot balmy nights affecting my sleep which was compounded by (at the time recently diagnosed) sleep apnoea; a condition in which you stop breathing for a few seconds and then suddenly, and raucously, inhale. Apparently, mere snoring pales in comparison. The Hospital Sleep Team kindly supplied me with a breathing mask. It’s a mask you wear at night that pumps air into the nose and mouth, alleviating the sleep apnoea, not to mention snoring. My wife is very keen on it. I find it very intrusive. It’s like having an octopus attached to your face. I feel as though I’m an extra in ‘Alien’, waiting for Sigourney Weaver to despatch the offending appendage from my face.  To add to the delight, sometimes during the night, a leak in the mask can occur, resulting in a loud raspberry sound, as air vibrates the rubber ag

In May the Disability Sector was anxiously awaiting the budget to see if there was going to be any additional funding. This sector was reported to be in a funding crisis. Previously there were rumours circulating that the Disability Support Services component of the Ministry of Health had blown their budget. Official Information Act documents published by the NZ Herald (April 21), showed that the Ministry had asked Needs Assessment Service Coordination Agencies to propose how they could cut costs. Suggestions for cut costs ranged from taking small amounts from a lot of people by reducing their shower time or meal preparation time to focussing on individuals with high value packages of care. One suggestion was people applying for support for the first time could be good targets because they wouldn’t have expectations of what could be available. Thankfully the Health Minister and the Minister of Disability Issues, canned these somewhat brutal measures. The Budget did have some additional funding, but ahhh, not that memorable.

In October I was a speaker at the Delivering Disability Services Conference “Panel Discussion: what does a great life with a disability look like – and how can we enable people to live it?”

A broad topic to say the least. To prepare reflected on my own life and what was great. I quickly realised that what is great changes over time. I decimalised my own life story into ten year chunks. It went something like this. In my pre-teens a ‘great life’ was going to a friend’s place to play, with the pinnacle being a sleep over. In my teen years it was all about being one of the cool kids and going to parties. The parties started off wholesome but over the years of my teens they were the antithesis of wholesomeness, but still I thought it was all ‘great’. Towards the end of my teens the focus became leaving home and going to university. In my 20’s it was meeting my partner, moving in together and then having our first child, in rapid succession. In my 30’s it was about getting a job (before that I was a stay at home dad, looking after kids). In my 40’s a great deal of time was spent on progressing my career. Now in my 50’s pleasure is derived from playing with my granddaughter and time with the family. It’s remarkable how chunking down time into ten year blocks simplifies life so much. Maybe it’s the reflection of what’s great rather than not so great that distils and simplifies ones memory.

This week has in mid-December will be forever tainted with the memory of an unpredicted and catastrophic eruption on volcanic White Island- a profoundly tragic event  At the time of writing this column, six are dead, at least eight are missing and many more are seriously injured. It seems to be the bad things we remember in great detail. Macabre memories seem to etch themselves with greater vividness than good ones. As we enter a new decade of the 20’s take time out to relish and remember the good times.

Wishing everyone a Merry Christmas and an inclusive new year.

Jonny Wilkinson is the CEO of Tiaho Trust – Disability A Matter of Perception. A Whangarei based disability advocacy organisation.