We Have To Stop This: An Open Letter To The Disability Community (and Huhana Hickey)

Can’t see Huhana Hickey’s comments? That’s probably because they’ve since been deleted, or you’ve been blocked. That’s what happens with this sort of thing, the evidence gets deleted to cool the jets on a hot issue. That’s social media. It’s too easy (and frankly too acceptable) for us all to insult each other.

I know that because I used to be the master at doing it. I want to start with that unquestionable fact. I also want to acknowledge one thing from the outset of this blog.

I fully accept the mistakes I’ve made in the past when it comes to some posts I’ve published about New Zealand’s disability community, and specifically, a few of the people within it. At the time I felt justified and correct in what I’d said and posted, but do I look back and wish I’d done some things differently? Absolutely.

Nobody is perfect. I am the least perfect person I know and I think my track record can attest to that.

Every person I’ve ever met in this community has by and large been fighting for the same goal, and every one of these people have faced a high level of systemic injustice. That injustice fuels me to a great degree, it does make me angry, and it did once consume me.

It got to a point a couple of years ago, after falling out with a mentor, someone who I considered a good friend (almost a brother actually) where I had to look at myself in the mirror and ask if it was worth it.

Asking that question is the easy bit. Taking time away, going offline, telling yourself (and others) that your done, whatever, that’s the easy bit. If you’re only doing that you aren’t actually making a change at all.

I knew I’d made mistakes, I know he had made some too, and I knew that my hopes of getting back to the public speaking stage were probably gone at that point. I’d probably lost one of the only ally’s I had left.

It hurt, a lot. I had to own it.

I also felt a great sense of frustration toward our community, because it felt like we were all fighting each other. I felt that me and this person should have got into a room, without any influence of the third parties that were always present, and just hashed it out, like men.

I chose my mental health, deciding to take the very deliberate approach of stepping away from the disability community (especially in terms of advocacy) and focus my full attention on my work in sports media.

I think I made the right decision because now I’m getting more regular work than I ever have before. I’m busy each week, with deadlines to meet, people to interview and invoices to send.

To tell you the truth, I’m loving it and I’m feeling a real hunger to continue solely in this space. And I can tell you this, writing about rugby for a living might just be the simplest thing I can do moving forward, because I don’t know if there is any coming back now.

I wanted to start there and preamble my way into talking about the events that took place this week regarding a story I wrote about accessibility onboard the upcoming Te Huia commuter train between Hamilton and Auckland which, surprisingly, didn’t appear to go down well as anyone of us would have hoped. I want to address my comments about Huhana Hickey, and the specifics around that.

In terms of the specifics, here are the facts as they happened:

  1. Waikato Regional Council invited me onboard the Te Huia to provide feedback on the accessibility after two members of Waikato’s disability community recommended me.
  • While on the train, I asked several questions about the development of the accessibility, future plans, and how disabled people could book their place on board.
  • After speaking with Waikato News, a publication I’ve written for in the past (owned by NZME and a part of the NZ Herald), we agreed it would be a good idea to write an opinion piece rating the accessibility and my own personal thoughts on Te Huia.

(It’s worth pointing out that an opinion piece in news journalism is just that… somebody’s opinion and analysis of a certain topic).

  • On Friday morning, the day after publication, I had several screenshots sent to me by members of the disability community regarding comments Huhana Hickey had made about me on the Accessible Travel Facebook Group.
  • I was then notified by a Hamilton City councilor (a contact I’ve interviewed before) about a series of Tweets that Huhana Hickey had put in conversations, labelling me “mis-informed” and “disablist”.

The latter of those two labels is what lit a fire in me to speak out, and not for the first time when it comes to Huhana Hickey who’s publicly insinuated that I was a supporter of the gas chambers back in the Hitler reign for my choice to vote yes during last year’s End of Life Choice referendum.

After that experience, Huhana blocked me when I raised my concerns about the comments and asked for an apology.

Since then, her comments about me haven’t been just a couple of isolated examples here and there, but a pattern of behavior where disparaging comments about me have been made across several videos, posts, and on message boards, I do feel the need to defend myself and my credibility.

If it was just a few examples, ok I can live with that because criticism comes with being as outspoken as I have been in the past, but when it’s clearly opportunist and not genuine (because this isn’t really who Huhana is in my view) I start to have a problem.   

Have I been guilty of the same sorts of things in the past? Absolutely. But I was always up front about who I was speaking about and never hid from that by not allowing whoever it was I was talking about to see such things AND respond.

If I felt I went to far, or was told on no uncertain terms why I was wrong, I would delete posts.

What Huhana has done is block me so I’ve got no retort and continue to put down my credibility.

Only because of others have I come to learn of this. It was a friend in the community who sent me a video where Huhana made her first comments directed at me, where the host sarcastically asked “oh I wonder who that could be?” while knowing full well the connection the audience would’ve made.

Only because of others this week did I learn of the comments calling me mis-informed, unqualified to access the accessibility of the Te Huia, and labeling me a disablist.

Sounds petty doesn’t it? That’s because it is.

My point of speaking out in this blog is to encourage the disability community to stop this sort of behavior from happening. You called me out when I was wrong in the past, you need to call out this behavior too.

We must stamp out the narrative that underpins this sort of behavior. We must be YES BUT people. We cannot afford to be NO BUT people. Don’t simply call others mis-informed because they might not be your personal cup of tea, because you disagree with them, or believe they are wrong in any way.

Lastly, I want to thank those of you who messaged me over the weekend to give your views. The majority of the messages have been supportive and for that I’m truly grateful. Some have asked for the specifics, and I’ve provided them here.

We are better than this people. I hope that next time I try to do something good, from a genuine place, for the community I belong to, the feedback might be more positive.

Disability Narratives & The Media

As a journalist, and as a person with a disability, this subject is of particular interest to me. Having been a part of the industry since 2015, I can tell you two things from experience.

Stories that involve disability, in any of its many contexts, are notoriously well received by most editors. At least that’s been my experience, I haven’t had a single editor throw a story back in my face and say “nobody cares”.

Quite the opposite in fact. I could count on one hand the number of times I’ve had a story about disability rejected.

The second thing is that context matters, background research matters, and an understanding of the long-held frustrations within the disability community is a must. That takes time, something that the news business typically does not have, but in doing so, you’ll quickly learn that language matters when stories do get published.

A phrase such as “suffers from” is a great example. It might be easy language, but it’s also inherently assumptious and places the entire life of the disabled person under an assumed cloud of suffering.

The reality is that most disabled people don’t suffer from their disability. Dealing with the toxic disability support system? Now that might be something we suffer from, but it isn’t the be all of our daily lives, because it implies the majority of us don’t have one.

As a journalist, former public speaker, current radio host, boyfriend, son, nephew, et cetera – I can assure you there is much more to life than the wheelchair in which I sit.

It’s imperative that news stories published by us in the mainstream media about disability are respectful and accurate. It’s also worth noting that journalists, and this is a mistake I’ve made in the past, aren’t always great at thinking about how a person with a disability may wish to be described.

I wrote one particular story last year, calling someone featured in my story a “disability advocate”. In my mind I thought it was ok, then I saw a tweet from the Chief Exec of a major disability organization that inferred my very article framed that particular person in what she called an “ablest narrative”.

It then dawned upon me, if ableism is to be present in how we the media report on disability, then we should probably have a look at addressing it. Simply relying on the ideology that reporting on a news story involving people with disabilities brings to light the issues impacting that community, and therefore brings about some change, is a flawed approach to have in my view.

If not, there will be a growing distrust between the disability community and the media. In our reporting of the news, and it’s also true that this goes well beyond just stories impacting people with disabilities, we need to slow down a bit and think about the wider contexts that are put in place because of the language being used.

None of that was done in some of the media coverage this week surrounding basketballer Thomas Abercrombie and his children, who also happen to be on the Autism spectrum.

Let’s hope more care is taken next time.

I Used To Be Angry, Here’s What I’ve Learnt

As a former public speaker during my mid-twenties, and something of an advocate for people with disabilities,

I often came across as an angry young man. It didn’t start that way, but for a number of reasons, trying to work as an ally for people who were navigating all the same obstacles both within and outside of the disability community was an exercise resulting in frustration at the best of times. 

Truth be told, I was angry and frustrated.

On deep reflection, I had every right to be as angry as I was, but what I didn’t have the right to do was project that anger onto others. 

So, to start today’s blog, I want to honestly apologize for that. 

I am sorry for projecting my anger, no matter how justified it felt at the time, onto you. I am sorry that some in the disability community may have felt attacked by things I had written or said. 

Trust me when I say, I’ve spent a lot of time and energy being angry about the state of the disability sector, and sometimes, angry about my own role within it. I am sorry for that too. 

Guess what that anger achieved? Precisely nothing.

Was it justified? Yep, probably, and anyone who was involved in the inner circle and prepared to look beyond what was being posted on social media probably understood that. 

That’s the thing about anger, and why we can often be tricked into having those angry feelings on more occasions than we would probably care to admit. 

Anger comes from two very important things.

Firstly, anger comes from injustice. That actually only clicked with me recently, but it’s hugely important to realize when taking a step back to assess your behavior and mood.

Chances are, if you’re really angry about something, it is coming from a place of injustice that you feel, or have felt for some time. 

You don’t have to be a rocket scientist to work out that there is a lot of injustice that goes on within disability land, and all of that injustice matters greatly.

I’m a firm believer that it’s our worst stories, the worst examples of discrimination, that should be where we focus because those stories are often buried somewhere near the bottom. 

To build better, you’ve got to build from the bottom up. Being angry isn’t a bad thing, but taking an angry action toward the things that you do (both professionally and personally) will likely always have adverse results, especially if you’re on the ground and a part of that building work. 

The second thing about anger is that it is often historical. The things we get most angry about, and the things that result in us using that anger in action, are often things we have historical experience with. 

So, in my case as that angry disability advocate, there was that deep sense of injustice that had historical meaning for me. 

Again, there is nothing wrong with having a deep desire to make some change in whatever community it is that you feel deeply connected to. 

For me, I didn’t just want to make some change, I wanted to be a leader in that change. For a while, that’s exactly what I did, but what I wasn’t prepared to do was be patient. 

When you feel like you’re doing good work, when you have a real passion for how that work can act as a vehicle for wider change, and especially when you’re young and inexperienced, patience isn’t exactly something that fits into the equation. 

But patience, as the great leaders of our time would tell you, is a virtue you must have. Patience, passion, belief, and a whole lot of room to make the small adjustments needed over time. 

There is no playbook to solving the problems that face our disability community. As advocates, and really as a group of people, we need to have a greater understanding of just why people might feel as angry as they do. 

Anger, as I myself continue to learn, cannot be the emotion that drives the discussions we have in this community, but we can’t attempt to just shut it out either. 

We need to accept anger, understand anger, and give people the real support to resolve that anger and turn it into something that can truly aid what it is we are trying to achieve here. 

Don’t just shut them out and label them angry, negative, and toxic people. Don’t just block them on social media. 

As for our leaders? They need professional development, they need mental skills coaches. 

I know now that my anger within the disability sector, something that honestly did consume me for some time, came from a deep place of injustice with historical roots.

I know I am not alone in that, and what I’ve learned from being in that place is indeed a greater understanding of the things that made me angry in the first place. 

The sense of injustice, the terrible history of blatant ableism. All of that, but what is getting angry about it going to achieve? Not much in all honesty.

Oppo Reno 4 5G Review: Try Before You Buy

There certainly is no shortage in quality smartphones that exist in the hotly contested and somewhat difficult to signal “midrange” market in 2020. Dropping $1000 on a phone is still a sizeable investment for most, and it’s something that Oppo is keenly aware of with their latest offering. 

I’ve been using the Reno4 5G for the past few weeks (thanks to Oppo being kind enough to send one out for review), and whilst the results are mixed, I certainly respect what they’ve managed to put in consumers’ hands with this product. As the midrange offering that sits between the cheaper Reno4 Z 5G and the topline Reno4 Pro 5G, the Reno4 does more than enough to warrant a purchase – if you understand just what you’ll be getting out of the box. 

In the hand, this feels like a premium product and is topped off by a superb glow-like design on the back which has a grippy texture to make holding the Reno4 5G a pleasant experience at all times. In terms of the triple camera setup, the Reno 4 5G rocks a monster 48MP main camera and a 32MP selfie camera. There is a bit of technical mumbo jumbo worth mentioning here – such as the camera system featuring the Sony IMX586 sensor and a nifty little Ultra Steady Video feature – but on the whole, you’d be hard stretched to find better photographic capabilities on a phone at this price point.

How those capabilities are executed remains up for debate. Camera features have come to be a big selling point on the modern smartphone, and this year, Oppo has also introduced what they call the Ultra Night Video, a handy little feature for those keen to shoot in the dark. 

In terms of raw power, the Qualcomm Snapdragon 765G claims to boost performance but I didn’t notice anything remarkable in this area. Apps load at a similar pace to my Samsung S10, boot-up times are virtually identical, but where the Reno4 5G does win is in download times. For memory, you’re looking at 128GB of space with no option for expansion, somewhat disappointing given that many phones that are priced less than the Reno4 5G have that feature. 

All in all, on a technical and design level, the Reno4 5G should serve you just right. But there is a problem here. 

The OS being implemented by Oppo is terrible. Named ColorOS 7.2, this is similar to some of Oppo’s competitors in that it has taken its own stab at Andriod and tried to make the operating system its own. It might be a thing of personal preference and is certainly nothing close to a deal-breaker, but the needless amount of apps that come pre-built into the Reno4 5G and a difficult to maneuver OS take up what little space the product has with a user experience that I cannot describe as anything other than annoying. 

But again, that’s a slight nitpick on my behalf however certainly still a genuine criticism. 

In terms of share value, the Oppo Reno4 5G does more than enough to push itself into the forefront of your decision making if you find yourself after a solid mid-range smartphone this Christmas. Definitely try to have a go with it in-store if you can, but know you’ll be getting decent value for money regardless. 

The Oppo Reno4 5G was provided by Oppo New Zealand for the purposes of review.

Vodafone To Offer Limited Number Of PS5 Consoles At Launch

In a move that needed to be made to match key competitor Spark (who’ve offered contract deals for Xbox Series S/X), Vodafone says its long-term goal is to make gaming more accessible to New Zealanders in an entertainment medium that is already on a high uptake. 

How that accessibility point is ushered in is a fascinating prospect as 5G rolls out nationwide over the next year.

The deal, which is available from Thursday, could also provide a small lifeline for gamers who missed out on preordering the hotly anticipated PS5 back in September when all launch day stock sold out in a matter of hours after PlayStation revealed its $820 price tag for New Zealand customers. 

Finer details about how gamers can purchase the PS5 through the telco remain vague at the time of writing, but Vodafone has confirmed that sales will be online only and can be placed from Thursday, November 12th. 

Whether or not Vodafone will allow the PS5 to be purchased on a contract (allowing people to pay it off over 24 months) or whether a full payout will be required is also unclear. Currently, the Vodafone website is showing the full RRP for the PS5 and PS5 All Digital consoles ($819 and $649 respectively). 

TheRealMichaelPulman reached out to Vodafone to clarify purchasing options but haven’t heard back at the time of writing. 

Those who signed up to purchase the Xbox Series consoles through the Xbox All Access Program via Spark pay $52 per month for the premium X version while the smaller all-digital S version comes in at $40 per month with both plans coming bundled with the popular Xbox Game Pass service. 

Vodafone Consumer Director Carolyn Luey says that the skills and popularity of gaming made the decision to partner with PlayStation one of benefit to its consumers. 

“Gaming brings people together and develops valuable skills such as problem-solving, concentration and critical thinking”, Luey said, “it is enjoyed by people of all walks of life and is increasing in popularity at an exponential rate.”

In 2019, Vodafone partnered with esports provider LetsPlay.Live (LPL) and has produced several esports tournaments, leagues and and experiences throughout 2020.

Hey Polly, Having Your Facebook Suspended Doesn’t Make You Disabled

In an otherwise interesting column for Stuff on Sunday, Polly Gillespie began her piece by labeling herself as disabled. An interesting way to start a column indeed, and being disabled myself, I was intrigued to find out what Polly meant by her interpretation and was fully willing to provide some advice based on lived experience. 

Sadly, Polly’s interpretation of being disabled is far different than mine. Shock horror, this lovely lady has had her Facebook AND Instagram page disabled! Apparently, she had posted some explicit content. 

Far be it from me, an outspoken AND disabled blogger turned journalist to get terribly upset over language, because I’ve written on multiple occasions about my thoughts on how the disability community spends far too much time bickering about the proper term to describe ourselves. 

It’s a tired conversation that originally started out as very important but got turned into something else. But I digress. 

I really wish I could tell you that the definition of being disabled was determined by a presence on social media, and while I’m sure that we should take the assessment by Polly with something of a humorous eye roll, this is also no laughing matter. 

Disabled people and their families are faced with many challenges on a daily basis just to achieve something in the ballpark of equality. Whether it be inaccessible housing and transport, under-funded support systems that continue to be rationed by Government wherever possible, or a lack of fair access to mainstream education, these are all issues that the disability community passionately fight to rectify every single day. 

They aren’t just disability issues but basic human rights going unmet in many well-documented examples which are just the tip of an ever-growing iceberg. 

I am quite sure that Polly has no such issue with any of these fascists in her daily life if her primary complaint of the week is the suspension of her social media account. Either that or we’ve sadly gotten to a place where we value our social media platforms and abilities to use them as a sort of measuring stick to what accessibility truly is. 

This might come across as a bit of an angry reaction to a simple sentence in what I’ve already described as an interesting column otherwise, but it shows a complete lack of understanding of what disability actually. 

Furthermore, as a few of us disabled writers pointed out on Twitter, Stuff would be better suited using their platform for a more intelligent assessment of disability and the myriad of sub-normal barriers that is presents. 

Such coverage is needed far more in mainstream media, and it needs to come in large part from disabled people like us. Being into my fifth year in this industry, opinion writing is going nowhere any time soon, but news companies need to do it in a better way when it comes to disabled people, and any other marginalised community for that matter. 

So please, do better. And a bit of advice for fellow writers out there, think carefully about labelling yourself as one thing without doing the proper research to find out what is actually is.

Secretlab Titan 2020: A Gaming Chair For Disabled Gamers?

For the purposes of this review, I’ll be talking about the Titan model of this chair but it is worth pointing out that you can buy this in two other models… the smaller Omega version and the extra-large Titan XL version.

The first thing that stood out when we got this chair was the ease of setup. Secretlab has really tried to make assembly a breeze with all assembly tools are provided with a cool little accessory box to store them in afterward.

In terms of the instructions, you get a nice big picture instruction display. 

Set up took around 15 – 20 minutes but would be quicker with two people. Wheels screw onto the wheelbase which is then inserted into the bottom of the main seat frame. The armrests come pre-built onto the frame and the backrest attaches easily to each side at the rear.  

Materials wise, what’s immediately noticeable is that Secretlab didn’t spare any expense on the 2020 model. Using what’s called Prime 2.0 PU leather, Secretlab says that the fabrics on this chair are up to four times more durable than any other chair on the market.

Cold-cure foam under the upholstery and the mold of the chair shapes to the user’s lower back. There is also a comfortable memory foam pillow can also attach and detach from the backrest.

In terms of actually sitting in the seat, there is an overall firmness with a solid underlay which makes for a different feel to your average seat.

Obviously, you’d expect that given this is a specialized chair and given it retails for over $700NZD.

Visually, the chair is striking. Wherever I put it in the house, be that the lounge or in my bedroom, the design truly drew my attention with a good balance of striking logos and a simple mix of black and red color across most of the frame.

That leads me to one of the criticisms many have of these sorts of chairs, is it just all for the looks? 

Well, materially and as a chair that you’d expect to spend a lot of hours sitting in, the Secretlab Titan certainly feels just as premium a product as it looks, but again, at a $700 NZ Dollar price tag, you’d definitely expect that and it’s a hefty investment to justify if you’re just getting it for the visuals.

I personally loved the look of this chair, logos are also molded into the plastic of the armrests which is a cool, albeit slightly meaningless point in the grand scheme of things. 

Speaking of the arm wrests, they can be moved sideways, from front to back, with height adjustments and a full metal internal mechanism. The lumbar support on the lower back can also be adjusted, and the chair can also lock into full recline which allows the user to have a power nap if need be. 

So, that’s what you need to know about all the features of this chair and how it will serve the average user. It is undoubtedly one of the best chairs on the market today and I’d highly recommend it for most people, especially if you spend multiple hours working at a desk each day. 

I even had a few able-bodied people try it out and they all said it surprised them in terms of how comfortable it actually was. 

But what about for disabled people such as myself who might be wondering if this can serve as a viable option for a seat when sitting at our computer? Can this possibly match up to A the comfort and B the support your wheelchair provides you? 

The answer is, well, it’s complicated and it really depends on the end-user. 

For disabled people who have a good amount of upper body strength, the posture support of this chair is great, but the bigger question really centres around those who may be more physically restricted. If you do fall into this category, despite the ability to move armrests back and forward, up and down, and side to side, this chair won’t provide the support you’re likely needing to move freely. 

For myself personally, as someone who has specialized seating on my power wheelchair as a result of very little upper body strength, I found I couldn’t do much when sitting in the chair unaided. Don’t get me wrong, it’s comfortable, it looks nice, but the benefits here are really for your average user who can do a bit more for themselves. 

This didn’t surprise me in the slightest Secretlab didn’t go into this designing a purpose-built gaming chair to cater for the physically disabled, but in terms of that particular demographic, the Secretlab Titan is a hard sell because it won’t be until you actually get into the thing until you know if it can meet your needs or not. 

And again, at just over $700 NZD, that’s a hell of an expensive trial.

Disclaimer: The Secretlab Titan was provided to us for review purposes.

iPhone 12: Same High Price But Little Innovation Once Again

As I tweeted earlier today, there is something about a brand-new smartphone (regardless of the brand) coming with no charger or crappy pair of headphones that feels grossly unnatural. Having said that, wireless charging isn’t exactly a new innovation and in the case of Apple, they’re banking on the fact that most who upgrade to the iPhone 12 will already have chargers on hand.

To give Apple a bit of credit, the iPhone 12 will come with a USB-C cable, so all the consumer needs is the wall adapter, and even then, it doesn’t have to be official spec.

Personally, I made the switch from iPhone to Samsung last Christmas, and whilst the adjustment from OS to Android took a bit of getting used too, there is nothing from today’s Apple event that makes me think I need to switch back.

Indeed, there is nothing about the iPhone 12 that really sticks out above its predecessors, and certainly nothing that makes me second-guess my well loved S10.

Here’s the thing. For me at least, the iPhone 12 is just more of the same with a slight improvement to the camera and an increased operating speed thanks to that sexy A14 Bionic chip. That might be a somewhat dull assessment, but to the average consumer like myself, that’s simply how these Apple events have come to be.

Apple events are flashy, focused, and extremely impactful marketing tools that those firmly aboard the iPhone fandom train will tune into each year. To the general consumer though, they are typically events that end with the same question, a question that starts and ends with to second guess the cost of the device in question.

And honestly, call me a bit “behind the times”, but how much better are we really expecting our smartphone cameras to get at this point? Is the camera really worth shelling out over a grand for? If that’s your market, go and spend the money on a good quality DLSR.

Priced firmly in the premium market at $1350 for its ‘cheaper’ mini version, the iPhone 12 is a hard sell given the current financial outlook for many after a year of uncertainty and job losses on mass thanks to COVID-19.

To those who can afford it, and especially those already in the Apple echo system who are looking for an upgrade, an iPhone 12 purchase makes a bit more sense.

But for the average user, and especially an Android native considering making the jump to Apple’s latest offering, the iPhone 12’s wildly overpriced $1350 just to get in the door should make for harrowing reading.

Enabling Good Lives? More Like The Untrained Middle Man

First thing’s first. This blog probably won’t make sense. Today I’m feeling depressed, anxious, and more than a little tired.

If there is anything I’ve learnt over the years it’s that feeling down is a genuine part of the human experience. Cliché terms like “it’s ok to not be ok” are so repeated these days that the first natural step to countering the feeling of being down is to tell yourself it’s ok.

In fact, it’s a sentiment that is almost ingrained in us at this point.

But after a good week or so of feeling a bit down and telling myself it’s ok to be feeling this way, I haven’t exactly pulled myself me out of the rut in ways I would’ve liked. I actually did some self help on Google by searching how to get out of a rut earlier today – which then led me to spending a solid hour writing a two-page document of all the things I’m feeling, good and bad.

I started with the bad because, naturally, that’s been how I’ve felt as of late.

I then stared at the document, and it didn’t take me long to work out why I’m feeling the way I do. It’s not work stuff, nor is it anything too personal. An inherent realization has dawned on me in recent days, and it’s one I’ve had before.

Here’s that realization:

Enabling Good Lives, as a concept, simply isn’t achievable. Now take that with a grain of salt, because it is just one opinion and it comes from a place of frustration. The frustration is the value part of Enabling Good Lives, because what is the actual value here?

At its core, Enabling Good Lives serves to help disabled people manage their support system, by way of their own budget which pays for said support.

What it doesn’t do, at least in my view, is provide the actual tools to understanding how responsible one has to be in order to do the managing part. From its very conception, I was always told that Enabling Good Lives was a way of removing the middle man and truly taking control of support is a requirement for most who live with a disability.

That support can be mild or intense, but the big mantra is about putting the person at the centre of it all. My question is this:

Do we actually understand what that looks like in practice? Maybe my situation is different to most because I come under the “high needs” category, but I often feel like the middle man at the centre of it all, as if the responsibility for delivering the services has shifted away from others and landed squarely in my lap in some way or another.

Do I like that? No, not really. I’m fully prepared to admit that I strongly dislike having the responsibility. If I am to buy into the values behind Enabling Good Lives, I’m meant to be in charge of it all and be self-determining my own life right?

Wrong. That’s not how it works in practice. How it works in practice looks like this:

You go for weeks, sometimes months, without hearing from anyone who actually works at Enabling Good Lives (or the Ministry of Social Development to be accurate). There is the odd check in, you’re told to just ring if you need anything. Other than that, the silence is truly deafening.

It’s assumed that everything is ok, or at least that’s how it feels.

But as soon as there is a budget issue, like when you overspend for a month because you racked up HR time advertising for and hiring a new worker, you’ll be hearing from someone pretty quickly.

Maybe that’s what triggered all these feelings I am having. I felt guilty for overspending. Typically, I let others manage the budget side of things. That’s what they are paid to do, and yes, when it comes to hiring a new worker, your costs will go up for a period of time on the HR front.

So why does it feel like my fault? Why do I feel like I’ll be punished for it someday soon?

It goes without saying, as a disabled individual with high needs that evolve from day to day, I’ll probably only be needing more support as life goes on. Right now, that makes me feel incredibly anxious, almost guilty, because I can foresee the inevitable conversation about managing my support budget, which really means cutting back not getting more.

This is not Enabling Good Lives, nothing close to it. Last week I had a conversation with a fellow participant who also manages his own support structure, and I asked him how he’s finding the process.

Here’s what he said:

“Honestly Mike, it’s been really stressful.”

I can relate. There are so many cogs to the wheel, and from my experience, it only takes one of them to go slightly awry and the whole thing comes down. It is an inherently stressful exercise where you are the middle man.

As an Enabling Good Lives participant, I’m given the ability to manage my support structure. What I’m not given is the tools to understand what that really means on a day to day basis.

That’s something I have to teach myself, on the fly.

I Can’t Quit Social Media, But I Can Do It Differently

Like a lot of you, the thought of logging out of all my social media accounts and “disconnecting” has flashed through my mind a lot as of late.

Also, like a lot of you I’m sure, I was left somewhat shocked by what I learned when watching “The Social Dilemma” on Netflix recently.

Even if you aren’t on the major social media platforms, or perhaps you are and you don’t feel being on them is a problem worth considering, I’d highly recommend you take a look at the documentary.

“The Social Dilemma” doesn’t necessarily expose these tech giants for their happy willingness to do all they can to keep our eyes glued on the screen, but it confirms what some of us probably already knew if we really stopped to think about it in the first place.  

I certainly don’t like to think of myself as some sort of lab rat being experimented on, but in reality, it’s hard to argue that these social media platforms all largely started out as experiments and took off to heights that even their own developers didn’t imagine.

Sure, any business is an experiment at its beginning, but few have the potential to contribute to the negative impact on our mental health that Facebook, Twitter, and yes, even Instagram can have on our population.

Anyhow, I didn’t start this blog to write a review of “The Social Dilemma” or try to convince you that social media is bad, I want to talk about why I’m going to make a consolidated effort to lessen my time on the socials and what that could look like.

I Can’t Quite Social Media, But I Can Do It Differently

It seems somewhat disingenuous to make bold claims of lessening my time on social media, whilst at the same time writing this blog and sharing it on social media for you all to read. How else would I share it? Send a link out via an email? Maybe text it to my closest friends and family?

No, quite honestly, the only place to share a blog is on your respective social media timelines and I can guarantee that it’s on social media that you came across this in the first place.

This blog is probably one of a few things you’ll read online today, so no, the answer for me (a freelance journalist and experienced blogger) is not simply disconnecting and walking away because I’d effectively be putting a bullet to my career.

Social media is here to stay, it’s likely only going to increase I’d imagine, and it’s definitely going to be a requirement for those of us who work in the information/news/distribution spaces.

So, I’ll be sharing the content, monitoring feedback to it, and doing by best to respond to intelligent comments, but I’ll also be finding a way to utilize mass sharing using services such as Buffer or Hootsuite to do the distribution part.

But why? Why, for me personally, is limiting time on these services scrolling up and down such a bad thing? Surely, as a journalist at the very least, I need to be connected and up to date at all times?

I hear and take your point, and this is the very reason why this “experiment” to reduce time on the socials isn’t exactly knew. I’ve tried before and failed.

For me, and I wonder for a lot of you who may either be in similar situations or are considering taking on the challenge of less time on social media, it’s not a matter of disconnecting altogether but radically changing up your time on Facebook, Twitter, and especially, Instagram.

Maybe it’s just me, and let be completely honest for a moment, as someone with diagnosed depression and anxiety I’ve noticed that Instagram is a major trigger for a meltdown because it visually shows me what is often the “best” of what others are doing or the “best” of what they have going on.

So, I started this “experiment” by logging out of Instagram and I’ve promised myself I’ll only check in once every other day. That feels like a good place to start as its Instagram which seems to trigger the most.

This morning, instead of checking Twitter and endlessly scrolling through my lists (in my case, curated lists with the latest in politics, rugby, gaming, and disability) while having breakfast, I decided to just use my screen time looking at the actual news apps to see what was breaking.

There is something odd about using Twitter, a platform that is becoming more and more clouded with mis fact and division, as the first place to get my news each day. Ok, granted, I’m fully prepared to admit that using Twitter will often take me to the same official news outlets anyway because I come across a story that I need to read (both out of curiosity but also because of my profession).

It’s just the other stuff that I could so without at this point in my life. I don’t need to hear about everyone’s reaction to the news, I don’t need to see why you agree or disagree with something that Jacinda Ardern said today or why NZ Rugby is a monster organization in desperate need of change.

What I do need is time to breathe, room to concentrate on my work which as a journalist, blogger and part time communications assistant, requires discipline that clouded, information overload with a side of some 1000+ live reactions flashing across my screen simply doesn’t provide.

I’ll start here. It isn’t about disconnecting, I won’t do that, I will check in a few times a day and continue to share my latest yarns, but I’m certainly not going to be scrolling up and down trying to find ideas for the next thing or using these platforms to latch onto others who can increase my professional cred.

Everyone, it seems at least, is an entrepreneur on social media these days, myself included in large part. Our thoughts have become the primary driver behind it all, and it’s what creates so much division, because how can we disagree and still respect one another when there are no parameters to what we can share?

I’m not saying that you shouldn’t be on social media. I’m saying we all need to put more time, and more value, on something that is beyond that screen that almost never leaves our side.

When writing this blog, it’s a beautiful sunny day outside. I spent my time between pages by taking a stroll down the street and enjoying the fresh air. Nothing happened, my career didn’t suddenly end. It felt great, maybe because spring is here and I’m feeling different.