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.

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.

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.

Candidates Struggle To Get Point Across At Disability Election Forum Full Of Interesting Ideas

Perhaps it was these words, spoken by ACT Party leader David Seymour during his opening statement at the My Voice Matters 2020 General Election Forum, that set up what was an afternoon of much conversation sprinkled with some interesting ideas by the candidates on hand.

But the actual how, why, and when was missing for the most part. What was impressive was the list of candidates that did make themselves available, all of whom came with strong ideas that many would’ve heard before.

From Seymour himself to Carmel Sepuloni (the current Minister for Disability Issues), popular Greens MP Golriz Ghahraman was there, as was the astute National MP spokesperson Alfred Ngaro and New Zealand First counterpart Jennifer Marcroft.

On that front, the My Voice Matters 2020 General Election Forum was a success, but just how some of the many talking points are actually put into action is anyone’s guess.

My Voice 2020 General Election Forum: What You Need To Know

Most of the major hot points were addressed, from education and employment, to housing and transport, as well as accessibility law and the controversial health and disability review.

Due much in part to some dreadfully short time limits on answers by the moderators, a lot of the detail from the answers was lost early on in the forum, and it left some candidates visually frustrated.

Perhaps, if more time had been given, candidates who all agreed that better access to New Zealand Sign Language (NZSL) in mainstream classrooms will be another key area of focus could’ve had the opportunity to expand on the actual work that their particular party is prepared to do.

Discussions about a lack of funding, disability specific teacher training, and accessibility to tertiary institutes were shared amongst the candidates in terms of education and schooling.

The Greens want a greater understanding of disability across the entire education sector, one that also comes with increased funding and caters to the varying levels of support required, regardless of whether a child seeking learning support is intellectually or physically disabled.

What’s clear is that the Greens might have a good understanding of how wide-ranging the spectrum of disabilities amongst learners can be, but like all the parties present at the forum, the exclamation point on how a more equal footing into the education system and prolonged equal learning for disabled children was lacking.

On employment, little to no change from the existing status quo is being promised by the major political parties.

Most candidates agree that there is an opportunity to utilise the new ways of working to reduce some of the barrier businesses feel are too much when it comes to hiring disabled people, such as physical access to buildings.

But in that exact same breath, there was an admission that access to technology which facilitates that is another core issue facing people living in the margins.

New Zealand First is prepared to double down on funding for Workbridge, remaining firm in their belief that the best way to get more disabled people into the workforce is through the pastoral approach that many say is failing disabled people wanting work.

The Greens suggested a quota system, where businesses would need to hire a certain amount of disabled people, while National’s Alfred Ngaro insists that culture and attitudes toward hiring disabled workers needs urgent address.

In terms of the Health and Disability review, it was perhaps the stance of National that is most intriguing.

The party in blue say that they’ve met with the Disability Rights Commissioner to understand why so much of the representation was missing from the design of that controversial report. It’s National’s view that the design concepts around the wider disability discussion in Parliament need a redo, including where the few voices involved in Government workgroups are actually coming from in terms of the community level.

It was also National and the Greens who appeared happy to support the idea of a disability-specific entity in Government. Having such a body has long been a suggestion by some leading disability rights groups and advocates, but Labour, New Zealand First and ACT all opposed the idea when asked the question at this particular forum.

National were also the only party to say explicitly that the disability community is being let down by the current work being done at a political level to address domestic and sexual violence towards disabled people.

My Voice Matters 2020 (and disabled people) Needed More Time

As with any political forum, there is a lot to digest in the wake of My Voice Matters 2020, so much so I’ve had to skip over a fair bit in this review.

For the most part, and considering it was quickly moved to an online only event with all the usual technical hiccups in parts, the forum ran well.

Many of the questions those in the disability community wanted answers to will have to wait for another day as there simply wasn’t enough time on hand or capacity to address them all, but ideas such as increasing the funding for Workbridge (NZ First) to increase disabled people in jobs as well as a clear desire to rule out starting a disability-centric entity in Government by three of the major parties should leave a bit to talk about.

Some candidates will feel they didn’t get enough opportunity to speak about their plans, but what’s clear is that all the major parties have some diverse ideas about the best way forward for what remains over a quarter of New Zealand’s population that actively identify as disabled.

Just what all those ideas will actually look like in practice will depend on the Government of the day post-election, but for Labour at least, they seem content with the work they’ve done so far and are promising to double down on that.

Lies, Morality And Being Called A Nazi: Why I Am Voting YES To Legal Euthanasia

Of course, that’s a completely barbaric conclusion to jump to.

But if you were to really sit back and listen to what some of the most compelled and very loud activists against David Seymour’s bill have to say, I wouldn’t blame you for having a bit of a chuckle at the notion that this is the very eventuality some are predicting.  

With that said, the decision that awaits New Zealanders in the upcoming weeks is an important one, and it’s really no laughing matter.

As one disabled person living in this country and someone that likes to try and tackle some of the most important issues facing people like me through blogs and articles on the internet, I feel it’s now the right time for me to put pen to paper.

The debate around this bill has been so fierce, so emotional, and sadly, riddled with so much miss-truth and scaremongering. I’ve attempted to promise myself on many occasions that I just wouldn’t go here, for my own sanity if nothing else.

Before I get into why I am going to vote yes and why I feel some of the passionate disabled people in my community have spread dangerous propaganda in order to suit their own morality and personal brands, I want to make one thing perfectly clear.

I won’t be responding to any feedback to this blog, be that positive or negative. No matter how well-crafted, passionate or otherwise, please don’t expect a response. If you do, best stop reading now.

I just don’t have the time or the energy to try and justify what is an argument that comes from a very personal place for all of us, and as recent experiences have sadly made me realize, I am not going to open myself up to being called certain names or have my credibility as a disability rights advocate questioned by people who simply don’t know me nor understand how much I’ve tried to challenge my own viewpoints on this matter.

I’ll give you an example as to why I’ve made this decision.

About three or so months ago, well-known advocate Dr. Huhana Hickey labelled me a fascist supporter of the Nazi agenda when I attempted to speak up in support of a disabled man who spoke in support of this bill on social media. When I challenged Dr. Hickey and publicly expressed my disgust at her comment toward me, she blocked me from all social media platforms.

That’s some fine behaviour from a well-seasoned advocate and human rights lawyer with experience that exceeds my years on this earth, and on a personal front, someone I respected and actually admired until that point.

At that moment, I was all but done with this whole disability advocacy thing.

Last week, a source informed me that Dr. Hickey had actually shared an article I wrote for The Spinoff but couldn’t bring herself to credit myself for writing it – pretty disappointing considering her well-publicized views on the lack of interest in the disabled community by politicians and that I had also credited her own efforts in this space in that same article.

For the record, this is not an attack on Dr. Hickey, she is entitled to be against the End of Life Choice Bill, as are all the others who’ve worked so tirelessly, but what she’s not entitled to are her own facts.

Speaking of facts, here is one fact.

I am NOT a fascist or a Nazi for saying that, yes, I believe assisted dying should be legal in New Zealand. Such comments, even if made in the heat of the moment and quickly deleted thereafter, are dangerous and unhealthy.

Here’s my take on the matter.

The issue, as it pertains to disabled people, isn’t with the actual End of Life Choice bill. Maybe I am just a dumb misinformed New Zealander, but to me, the criteria bit seems pretty clear when I read this bill.

The issue is the current systemic failings in the disability support system.

Almost every single disabled person who’s spoken out against the bill has noted this also, and their fear is understandably how these failings could lead people like ourselves to act as if euthanasia is the only option.

I understand that completely, but in my mind, that speaks to the work that needs to be done to change this system, not just address it and advocate, but to actually change it.

What this also speaks to is the profound lack of value that some disabled people feel like they have within their place in New Zealand, something that comes from countless frustrations when trying to access support, education, and employment plus discriminatory behaviour toward them by the ignorant.

There is a distinct lack of belief that the system will change for the better, which based on successive Government promises not being kept and constant difficulty right across the spectrum, is the logical reaction.

But there is a sticking point that is both acknowledged already but also inconvenient to certain agendas.

For as compelled and understandably passionate those representing the disability community who are against euthanasia in New Zealand come across, should the referendum not pass in October and the status quo remains, isn’t the disability community still going to be in the same place anyway?

The only difference is that euthanasia, assisted dying, or whatever you wish to call it, is now legal by law. Nothing else changes, just yet another reset I suspect.

If the law passes by way of vote, at least we’d live in a New Zealand where the option is available for those with less than six months to live (like your aunt or uncle with terminal bowel cancer) or people with conditions that leave them in such a state of decline that their basic day to day life is pure torture.

And even then, is there not a choice to even begin the process in the first place? I’m pretty sure there is, but as Kylee Black’s very well-made video on DefendNZ is titled, choice is a relative term.

Here’s the thing, life is also relative, and if we were to get back to the real issue with the discussion around this bill, what’s also relative is the ability those in the margins have to access life on an equal footing.

That’s not just those with disabilities, of course, my view is that we’re all products of the privilege and/or the distinct advantages/disadvantages to which was the environment we came from.

That’s backed in proof by the hundreds of disabled people I’ve met and talked with through my career as a journalist. Without a word of a lie, I can count on one hand the amount of them that would be coerced into signing up for euthanasia if this bill came into law, and trust me when I say, some of their particular health circumstances are far worse than what those whom the likes of DefendNZ and other groups have chosen to highlight.  

If you were to listen to some in the disability community, you’d think that within just a couple of years of this bill coming into law, 1) the coercion from the non-disabled will get to such a level, or 2) people like me will be struggling to such a degree that we feel ending our lives is the best/only way, then that example might seem somewhat plausible.

There is no denying that the stats speak for themselves, and that’s where I agree with those against the bill such as Miss Black and Dr. Hickey. Where I’m skeptical is on who they speak for, because I’m sorry but they certainly don’t speak for me.

There is little to no doubt that disabled people are the most marginalized group in all of New Zealand and are reliant on Government-funded support systems that are woefully inadequate.

That’s the issue here, that’s where we need to focus our attention, because it’s here that the currently inadequate systems impact on us and us only. That’s where we are the ‘experts’.

The End of Life Choice bill and the upcoming referendum is an important discussion that stretches well beyond just disabled people. I will be voting yes, because I know this isn’t actually about me.

I know what my choice will be in life, I know my value in life, and I know that I’m damn sure not going to be coerced into anything by anybody.

We, as disabled people who feel vulnerable at every turn, don’t actually have the right to use our own morality and our own experiences to tell the nation why they should conform to what is a mindset based on personal experiences in a system that has failed those in the margins on countless occasions.

As it pertains to the disability community, my fear about how we deal with this remains high.

I fear that the discussion won’t change, I predict legal challenges will be made once the bill passes and could continue for many years post-election, and as scary as it might sound, I worry that many will continue some of the grossly unbalanced and inaccurate campaigns on social media that fuel the already high anxiety disabled people feel right now.

Such Is Life 2.0: On The Brink Of Death In Order To Survive

The following is the first in a series of blogs called Such Is Life 2.0, the self-written story of Michael Pulman by the man himself. Please note, some names have been changed to protect the identities of people and their families whilst trying to tell an accurate a story as possible.

Our story begins in November, 2004.

“Hello Michael?”, he asks, “hello Michael can you hear me?”.

Visions of my dream fade, a bright light appears. I start to wonder if this is indeed the moment where I’ve met my maker. All the signs of such are there, including this mysterious voice.

I don’t even know if my eyes are open when I hear that same voice once again.

“Michael”, he says, “Michael can you hear me?”.

I’ve never heard this voice before, but he sounds friendly. As I open my eyes I notice that the bright light I had visions of is in fact real. It’s one of those medical light stands, sitting directly above my face I can feel the warmth the lightbulbs omit onto me.

My eyes finally open and I see the man behind the voice. A man, somewhere in his mid-twenties, smiles at me. Next to him are a group of others, two down by my feet on the right side of the bed, writing down notes, and two doing the exact same thing on the left side.

I turn my head to the right and I see a familiar face. It’s Jason, the surgical assistant.

“Hey buddy”, Jason greets still in his blue uniform with a mask around his neck, “we are all done here my friend”.

I close my eyes and start to notice the sounds of a machine whirring underneath me, it sounds like a generator of some sort and its consistent noise makes sleep impossible.

It’s at this moment that I realize that the surgery is done. I don’t know how long I laid there in that room, the next thing I remember is being moved into a larger area than the one I had been confined to upon awakening. Two big doors electronically open, Jason swipes his card upon entry, and then the next thing I know curtains are being drawn around each side of the bed.

“Righto Michael”, another voice says, “I am going to get you all hooked up here”.

An Indian lady starts pulling cords, which I immediately notice are connected to different parts of my body, and plugs them into machines that are on stands next to the bed. The pull of the cords hurt my skin, I can feel plastic tape pulling hairs out of my arms and legs.

As it would turn out, that’s the least of my worries.

“Now Michael”, she says, “I want you to have a drink please but you must only take a sip okay Michael”.

Water never tasted so good, I’m so thirsty. I can’t cough, my throat is sore and the water is soothing. I want to ask for more, she obliges, but then I want more. She places the cup on the bedside table but it’s off-limits, I guess.

This would be a lesson that would serve me well in the coming years. Here is this cup, with water I want to drink, but it’s just out of reach. Sometimes the things in life that you want, the things which hold value to you, are always just out of reach.

“Oh my god” another voice cries, “oh my god is he ok?”.

I know this voice, it’s my sister. She sits next to my bed side, tears are streaming down her pale cheeks, she holds my hand and sobs quietly. Mum is there, Dad stands right behind her, all of them are in tears.

“It’s all done now mate”, Mum says, “we are all going to be right here next to you”.

Sleep is impossible that night. The pain comes and goes, each time I get close to drifting off I’m woken by the Indian nurse who constantly checks the machines I’m hooked up to. Not only is that getting on my nerves, but I’m not allowed to move much at all.

Each time I ask to be turned over, there is a reason why I cannot.

Since waking from surgery my back has felt heavy. My whole body is numb but I can oddly still feel all sensations.

Mum tells me that I look swollen, sister keeps on crying, and Dad does what Dad always does, he’s just there.

It turns out that the body requires a lot of adjusting when titanium structures are put into it. This isn’t just any old titanium, I’ve now got two rods fused into my spinal cord which run the length of my back, from my neck to my pelvis. All the body wants to do is reject these changes, and that’s where the pain comes in. For the first time, I am being moved around with these new parts of my body.

The pain levels were so intense that I cannot describe them to this day. Because your body is close to shutting down, it takes a long time for everything to get up and running again. Much of those little developmental milestones you achieve as a toddler are now lost, you’ve got to learn them again. Realizing you are going to the toilet without knowing it, being unable to eat, or vomiting mid sleep really rams home the reality that this is indeed a new beginning.

I did a lot of sleeping that week. The alternative was hell, it felt like every time I so much as twiddled a finger, I’d be in a world of pain and my body was reacting in ways that I couldn’t control.

The ceiling becomes my best friend, because it’s the only thing that doesn’t hurt or change my body’s behavior.

“You must have counted every bloody dot up there”, Uncle Gary laughs when he comes to visit. Gary is exactly right, I did indeed count every last one of them, and looking back, I can say I knew them all in very intimate detail.

It’s November, 2004, a month before my 13th birthday, a birthday I would spend in Starship Hospital. Eventually the pain subsided, the recovery concluded, and if nothing else, I had banked some wonderfully graphic memories of what it feels like to come to the absolute brink of mental sanity.

Trauma is something that I had to learn about and respond to at a very young age. Looking back on that time, I am thankful for it. Whether it be surgery required in order to survive, a choice you have to make in life, or the decision to start anew at something, you run the risk of facing considerable trauma.

November 2004 would be my first big experience of it, and it wouldn’t be the last.

Dualshock 4 Back Button Attachment Review: Not Really Accessible For Disabled Gamers

The Dualshock 4 Back Button Attachment adds a little more functionality to the PS4 controller and the wider gaming experience, but it doesn’t do much for accessibility.

Before we begin this review – two quick disclaimers.

I am a disabled gamer and I have a muscle-wasting condition called Spinal Muscular Atrophy. As you’ll see in the video embedded to this review, to say my hands are quirky would be an understatement.

With this in mind, I reached out to my friends at Sony to see if I could review the Dualshock 4 Back Button Attachment because I wanted to see if it will allow physically disabled gamers, like me, to better access gaming. They kindly agreed and shipped the product to my front door.

With that out of the way, let’s get into the review.

Almost from the get-go, you realize that the back button was not designed with disabled gamers in mind. The attachment is fiddly and tight when trying to connect and it took me several attempts to even get the connectors lined up correctly.

To connect, you need to hold down the latch (either with your thumb or another finger) in order to connect the attachment via the microphone in and extension ports. Once lined up, a firm push is required, using both hands, before the attachment clicks into place.

Whilst it is hard to judge exactly, as different people have varying levels of function in their hands and fingers, I would guess that many disabled gamers won’t have much independence when it comes to actually getting the back button connected and working.

Once connected, for me anyway, I noticed the controller was that much heavier in the hand. Not a lot heavier, but certainly noticeable.

But what of the gaming experience? I played the likes of Fortnite, Apex Legends, Project Cars 2, FIFA 19, and Crash Team Racing all at varying lengths during my time with the back-button attachment.

The tact-tile buttons are an easy press but don’t have much in terms of height, making it difficult for those who may not have good extension in either the ring or middle finger. What’s good about the attachment is that you can program it to map whichever button on the existing Dualshock 4 controller that you’d like, including the often-difficult press of the analogue sticks for parts of gameplay like sprinting or melee.

Using the back button for shooting and aiming in games like Fortnite or Destiny 2 will feel foreign at first but quickly became quite natural, however, the issue again is that this is dependent on the variable functionality in the hands of disabled gamers.

For shooters especially, many disabled gamers are already struggling to keep up the pace of gameplay.  

From a purely accessible standpoint, the overarching impression of this nifty addition to the PS4 controller is that it could be worth it for disabled gamers, but the risk of investment is high, because they’re not going to be able to discover that it can even come close to working for them until they’ve paid $70 ($30USD).

Yes, the back-button attachment may be just what they need to have a more level playing field using the controller, but for others, it could also be just the beginning of what they need and the entry to gaming may still be high and this attachment doesn’t address much of the issue.

Sony is already behind Microsoft in terms of developing hardware that is accessible to disabled gamers. They had an opportunity to catch up if a little more thought had been put into what is still a large portion of an ever-growing gaming market.

For me, the setup of it was all but too hard to do independently and I know it will be for many of my disabled gamer friends. That will immediately turn many off because what disabled gamers want more than anything is independence in their gaming.

Sadly, the entry point (in terms of connection) will already put up too barriers for many disabled gamers.

MY RATING: 5/10