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.

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.

Our COVID-19 Lockdown Lessons Were A Good Thing

Almost a week has passed since New Zealand lifted itself out of COVID-19 alert level 4, bringing with it a slight reprieve from the most restrictive times our nation has ever seen.

Never before, and maybe never again, will an entire population come to a standstill in the way it did throughout the month of April. Never again will the majority of us with the smarts required have the opportunity, perhaps even time, to think about how we really feel about the crazy thing we call our lives.

So what does it all mean for the future? Whilst times are still uncertain, if the state of national lockdown taught us New Zealanders anything, it should be just how lucky we’ve always been. 

Access to the environment, to our friends, to our work. Most of it wasn’t given a second thought by most prior to all this. Those same old roads, footpaths, lakes and parks, places of work, coffee shops and the people outside of our little circle that we spend the majority of the time trying to please or convince.

Oh, and those glorious takeaways! We sure as hell missed those!

We missed it all during the course of the national lockdown. It tested our mental health, our relationships, perhaps even our very lifestyles. And honestly, it’s about damn time.

The ones that were quick to try and break the rules were class examples of selfish, immature and ignorant. The ones that complained to all that would listen on social media about being stuck at home with nothing to do suddenly realised how meaninglessly frantic their typical day-to-day lives were prior to lockdown, you know the lives where social commitments and keeping everyone in your outer circle matters most? Yeah, those ones. 

It all kind of makes me feel happy to be a socially challenges introvert with a very small circle of friends. I didn’t have to miss a whole lot during the lockdown, I had what I needed right there with me (partner, cats, food etc).  

Thankfully, the smarts of most shone bright and we managed to do enough to have the restrictions eased somewhat, allowing us to now enjoy some of those basic pleasures like getting a coffee or going out for a quick fish. 

The easing of lockdown also allowed some of us to see close family for the first time in over a month, something I personally am very thankful for. 

The tone of this blog may bring out a rolling of the eyes depending on your viewpoint on the world around you. But I do implore you, if you couldn’t use this time to take a good look in the mirror and ask yourself some important questions, you’re probably missing the bigger point here. 

The point is, the majority of you reading this are privileged, you really are.

I know, it sucks to have that pointed out, but I’m not talking about privilege in the terms of materials. I’m talking about privilege in terms of the options you have in the world around you, many of those options were taken away during the lockdown and it forces you to deal with, and make the best of, the things you actually had on hand and not the things you could get. 

Do you feel me? I guess in a roundabout way, what I’m really trying to say here is use the experience of COVID to appreciate the little things in life a little more. If you don’t appreciate those you shared your bubble with, ask yourself why.

COVID should have taught us all a lot of things in all honesty. If it didn’t teach you anything, you’re proving my point.

But don’t worry, there is still time.

The Opposite Of Binging Your TV

A cold, drizzly Thursday morning has dawned in the rural King Country. It’s 2003, school is a drag, I just can’t math to save my life, but if I can just get through it this the reward waits for me later that evening. Thursday means two things in the Pulman household, takeaways from the Golden Lantern (hands down, the best takeaway joint in Te Kuiti owned by a lovely family) and the latest events taking place on Coro’s cobbles.

Yes, as a young boy, I was into Coronation Street, far from the sports and politically obsessed product you see today. Coro was a thing for me, mostly because that’s what Mum had gotten me into over the years. She was so dedicated to that show, you can’t help but decide one day to flick over and see what all these relatively normal people are doing on the streets. So, I started to watch with her more regularly and it became a ritual. Mum and I would pile into my parents’ bedroom, while Dad switched on American Chopper out in the lounge. As the first ad break came, “how’s the Choppers going?” Mum would yell out to Dad, “yeah” he would respond in his typical dry tone.

As dull as it was, that’s what we did every Thursday night, without fail. I’d come home from school, scramble to get homework done and then take a quick shower before picking up the landline and ordering the takeaways after the first segment of TV3 news was done. There was no better way to wash down the fat-soaked fish batter other than a glorious Dilmah Tea, just in time for the beginning of Coro.

Fast forward 17-years and I’m in my two-bedroom flat watching the first episode of Netflix’s hot new drama, The Witcher. It’s a cool show, based off a book and videogame I never cared to discover, but this is kind of what platforms like Netflix are good at delivering on, as well as original IP’s that take off in popularity from seemingly nowhere.

It takes me little time to get through the eight hour-long episodes of Witcher S1, including binging the last three all in one night. I certainly didn’t have to wait another week to find out what happened to the bore main character that is Geralt, or find out if the seemingly crazy Yennefer was actually going to turn out to be the unsung hero.

But then something happened. When I was most enjoying this new show, I couldn’t help but quietly wish that I could, somehow, find a way to delay the enjoyment and go back to the feelings of this being something to look forward to each week. You know, like those good days in 2003.

But Netflix, coupled with all the trends on my social media feeds, is doing all it can to push me toward binging through and joining the discussion about this show I’ve really enjoyed.

The problem is that the enjoyment of modern-day television has such a short lifespan. Quickly thereafter, I’m onto the next big show, and then the next one.

Today’s state of binge-watching has all come about from one show, when upon its release, the company creating it had a vision of what many others previously scoffed at.

Wondery’s fantastic podcast series Business Wars takes a deep dive into the history of Netflix. Based on Netflixed: The Epic Battle for America’s Eyeballs by Gina Keating, the podcast explores how, on January 31st, 2013, a meeting was held between Netflix’s head of content Ted Sarandos and respected filmmaker David Fincher. It was just hours before the first season of House of Cards dropped online with every episode immediately available. It was a bold, first-time move that Netflix hoped would catapult their internet streaming video service to the top.

Releasing all 13 episodes at once not only worked for Netflix, but it changed the very nature of how consumers would watch their favourite TV shows, forever. Furthermore, Netflix’s political thriller was also available on DVD, but with other seasons like Orange is the New Black also offering the same “all in one” online drop, the service could push ahead because its content was going to keep on coming and subscriptions were rising.

Little is it known that HBO, arguably Netflix’s biggest competitor at the time, predicted that the idea of letting audiences watch the entire season of a top-tier show was a sure-fire way to kill growth and lose subscribers.

Less than a decade later, a growing majority of people are watching the latest seasons of their favorite shows, in their entirety, in one or two sittings. Binge watching isn’t just unique, it’s become the norm.

Then came Disney Plus. When it was announced that Disney’s marquee offering at launch, a Star Wars spinoff series called The Mandalorian, was to be a weekly episodic release, the reaction drew a nervous gasp.

And yet, The Mandalorian was still successful despite drawing the season out over eight weeks. Disney’s hot new show was 31.1% more in demand than the average title worldwide, catapulting it to the top and surpassing even the likes of Stranger Things, widely viewed as one of the top shows today.

The Mandalorian proves that if you’ve got a show that will likely draw in a large audience (like Star Wars did, and like House of Cards would’ve) then it can work. The risk of losing subscribers to a service is always there, no matter how you deliver the content.

I’d also state that the shows we are watching today feature some of the greatest production and writing value we’ve ever seen, but I just wonder if that is short-changed short on the time and attention front that these shows deserve by getting through them all so quickly.

Think about how easy it’s been to start, enjoy and finish these shows since that famous gamble taken by Netflix with House of Cards seven years ago, the very nature of how we consume media, including our TV, has changed remarkably thanks to the growth of technology that is constantly adapting. But has it necessarily changed the cost and time required to develop TV?

No, because the binge isn’t just proficient in terms of consumer watching patterns. There is also binge-spending and it’s already increased from $12b to $15b, by Netflix alone since 2018.

That’s some serious investment and subsequent production time, somehow it feels wrong to me that I can, so easily, be all done with that and onto the next thing so quickly.

Freelancers Like Us Are Going To Be OK During COVID-19

Last week, on Twitter, I posted that I’d block anyone who played the ‘feel sorry for me’ or ‘please donate to my Patreon because I’m now out of work’ game.

The bottom line is this: we are all in a s**t situation thanks to COVID-19, and freelancers like ourselves have taken a big hit financially. Now is the time to have a bit of perspective, as hard as it might be.

Personally, if I am to be self-indulgent for a moment, I am now all but redundant until further notice. I am not the only one.

It would be easy for me, like many others who have been in the same position recently, to go on an all-out content push in the hopes that it would fill the void of what I may have had before.

Perhaps I am even guilty of this at times, but IMO there is a lot of gross and shameless self-promotion on social media these days.

When I transitioned from social media journo to regular mainstream journo, I noticed how loud the Twitter-sphere really was. I don’t mean that in a bad way, but it’s just loud, getting louder by the day in fact.

There are some who are really good at promoting themselves and have some genuinely good content worth following them for, but there are others who

So as the lockdown begins and we ponder the next month (at least) of being confined largely to our homes, what’s the best way to deal with this? There’s certainly been no shortage of guides, how-to blogs and inspiring stories of how people are making the most of the situation floating around the internet in the past couple of weeks.

The first way to make the best of self-isolation is to understand that you’ll likely go through different stages. You’ll tell yourself you’ve got a plan, but the key moving forward is to not overdo anything. That includes making content for the sake of making content because you feel like your platform can’t afford to take a break.

For some, it may also be a good opportunity to go back to some of the platforms we’ve let get dusty, or potentially some of us can put ourselves out there and create completely new ones.

Personally, my first plan was to get back into streaming on Twitch, record a ton of extra podcasts and even begin writing a book.

But in reality, I’ve really only done a couple of streams and podcasts, spending the rest of my time keeping a close eye on the news, watching Netflix and playing PlayStation.

It’s going to take time to adjust to our new lives, and you will likely stumble off the mark. I know that I certainly have.

Today, by way of this blog, is the first time I’ve managed to get some concentrated writing done, and I did it with no idea of what I was going to type on the blank word document other than the ideology of getting something published online.

That’s probably why the general direction of this piece is all over the shop.

PlayStation got in contact this morning, the new Predator: Hunting Grounds trial weekend is open for gaming media and fans alike from today, so I will have a go at that and write up a preview blog for the game on Monday after I’ve had some hands-on time.

Us rugby journos had a phone conference with the Chiefs CEO and media manager earlier and I am glad to report that there will be some opportunities to talk to players about their respective self-isolation experiences.

I also redesigned the blog, so if you are reading this, be sure to let me know how it looks!

Stay safe, don’t push yourself too hard. Keep what’s most important nestled in the forefront of your mind, you are (hopefully) healthy and safe, surely this is what really matters in the current climate.

COVID-19 Observer: Tuesday 17th March

Coronavirus is really kicking our arse right now. The borders are all but shut down, the economy is in the tank, even rugby and all the other major sports have been canned. 

What’s a sports journalist to do in these difficult times? My original goal was to sit down and write something to make you feel better, but honestly, right now that’s hard.

I can’t remember how many times I’ve said or heard the word ‘unprecedented’ in the last couple of days, but these are truly unprecedented times for us all. 

In response, our Government will be injecting $12.1billion into the rescue effort, but will it be enough? Probably not, I fear big time for the future of smaller businesses in New Zealand and the smaller businesses all around the world. 

It feels, in some strange way, like COVID-19 has been the wake-up call the world has been waiting for. Do you feel the same? How are you going to adjust to self-isolating in the coming days, weeks, maybe even months? 

If you aren’t in this position, count yourself lucky, but be careful out there. Now is not the time for selfishness, we are all going through a difficult time.

All of us. As one.

Paula Tesoriero, Disability Rights Commissioner Interview

The following is a full transcription of an interview with New Zealand’s Disability Rights Commissioner, Paula Tesoriero.

Michael Pulman: How are you feeling coming into 2020?

Paula Tesoriero: Well, I think we’ve got a huge number of challenges for the disability sector and in an election year, as always, it’s an opportune time to be talking about those in the public sphere. While we’ve got a number of challenges, I also think it’s a huge year for opportunity and so I’m feeling energized.

Mike Pulman: In 2019, there were some negative headlines, but it was a positive year in some ways with free public transport in some parts of the country and then Robert Martin. What was your reaction to that news?

Paula Tesoriero: Oh, I was just delighted to wake up to the news. I think that it’s been a real boost for the disability community. I think it’s also thoroughly well deserved. I think it really highlights for other disabled people, for the New Zealand public at large and internationally, actually, about what people with learning disabilities contribute to the world. It’s a really significant deal for obviously, Robert, but also for our community.

Mike Pulman: Yeah definitely, and I guess moving into perhaps a national discussion about disability, something like this is good to help inspire that?

Paula Tesoriero: Yes, I agree completely.

Mike Pulman: Moving into this year, an election, hopefully, there will be a lot of focus on this sector because it desperately needs some help. What are some of the areas you want to focus on this year?

Paula Tesoriero: I think that there is, as you know, and the people listening to this know, the list of things that we need to deal with as a country around disability are really significant so it’s always hard to narrow it down to a core group of things, but that’s the only way we make progress, I think. So the key things that I’ll be focusing on this year and in no particular order are the education reforms, as we know our education system is not inclusive and it continues to be a key area that disabled people and their families talk to me about so I’m going to continue the work that I was heavily involved in last year and continuing to make numerous submissions and hopefully influence the government to really use these reforms to deliver an inclusive education system. So that’s one area, the second area is that there’s a range of things that sort of set what I call loosely in a health bucket that I think this year we critically need to make progress on.  One area is far better supports for people with neuro disabilities. Last year, I did a lot of work with fetal alcohol spectrum disorder community and really started to learn much more about the significant challenges faced by people who face day in their families and how that group who are not eligible for disability support services by virtue alone and having it face day fall through the cracks at so many stages. So, we’re doing some work together and with the Ministry of Health to try and address that, also with the Minister for Disability, she’s also in that package as is the system’s transformation work. There’s also the funded family care and changes that I hope we’ll see this year that vote on last year. Then there’s the level of funding for supports disabled people. So there’s not the total sum of issues in there and the health backup. We’ll be finalizing an independent monitoring mechanism. Our report to parliament in the lean on New Zealand’s examination in relation to the CRPD date. And you know, we’ve done a lot of work in the second part of last year, numerous hui around the country with disabled people and so I’m really looking forward to finalizing that in the first part of this year.

Mike Pulman: What was the general sense around the country in terms of what we are doing in that CRPD space?

Paula Tesoriero: The overwhelming take on the report is that yes, of course, there’s been some improvement in some areas and the government have announced some reforms across particular portfolios that impact the disability community. But by and large, there’s still quite some way to go across almost every article. It was pretty humbling to hear people’s experiences and get a sense of how frustrated they are while also acknowledging that there are some good things happening. Violence and abuse also, this wasn’t a topic that I made a priority when I came into the role but it’s become a priority for a number of reasons. One, I’m not satisfied that, with the current reforms underway, there is enough of a focus on disabled people. Secondly, I commissioned some work last year to pull together the information that we know domestically and internationally about violence and abuse towards disabled people. One of the key issues that disabled women raised was violence and abuse. So I then commissioned some further work right at the end of the year, which I’ve now received, making some recommendations about what I can do in my role to impact this. And then look, finally, it’s going to be a year with not only the election but the referendum on the end of life choice. We know this is something that I have talked a lot about. And, you know, I sort of welcome discussion on this. I’ve been very clear. I hope that my views about the safeguards and particular issues relate to this bill. So, you know, I think often the debate becomes whether or not we should give an assisted dying regime. And that’s not really the issue here. The issue here is this particular bill. And finally, and this is the real finally, there are a number of reviews that we made submissions on last year. So, for example, the mental health review, the Health and Disability System Review, Child poverty, etc and I will continue to be monitoring those and also having ongoing.

Mike Pulman: Sounds like a busy year ahead and I’ve got a number of questions about this. This work in violence, is it just in terms of relationships?

Paula Tesoriero: No. I think that one of the really important impacts for disabled people is that it’s not just about angles of domestic violence. It can be admitted into settings, community-based care settings, violence and abuse more broadly.

Mike Pulman: I guess part of a national discussion about disability, and the real benefit of that, is hearing from sections of the community that we haven’t even seen or considered?

Paula Tesoriero: I absolutely agree. I think that fetal alcohol spectrum disorder community is one such community. It’s a hugely dedicated group of people who advocated for years toward changes. We have a real opportunity through early intervention, through getting in and providing support for young people and the families to hopefully change their trajectory. I think that this is an area which, again, New Zealand doesn’t talk about the alcohol spectrum disorder in the way that we should. To date, there has been some focus on prevention. But actually, what we critically need in New Zealand now is a focus on support that people will get. That’s what I’m trying to support the community to do, to really focus the government’s mind on support for these people. But you’re right, we have a big opportunity to talk with different groups in our community and make sure that we all have a really good understanding of disability right across our sector.

Mike Pulman: I want to ask you about the End of Life Choice Bill. What would the percentage be between people you’ve heard from who are against this bill versus those who might support it?

Paula Tesoriero: I can’t really gauge that in terms of the general population. But in terms of disabled people, the people who have communicated with me by far overwhelmingly are against it. Very, very few people who have identified themselves as being disabled have contacted me saying they disagree with my point. I think what I continue to encourage people to do is really get to grips with the contents of this bill because my worry is that we will have a discussion this year about whether or not we have an assisted dying regime. Actually, that’s not the question here. I think it’s really important for the disability community to understand the specifics of this bill because if we are going to have some kind of regime in the future then we need to have one that is really robust and really safe. One where we have a way of guaranteeing that there won’t be wrongful deaths.

Mike Pulman: How did you feel going out an advocating so passionately against this? What was the experience like for you?

Paula Tesoriero: I think, you know, this role is a role where, you know, I do feel a weight of responsibility and that there may be times that shows. It’s a privilege to be in this role and so I take every opportunity I can to influence better outcomes, but this particular debate was hard. This seems to be an issue where people are not afraid to make quite personal attacks. My view on when you resort to making personal attacks is that it’s a way of not really engaging in the issues, so I had to just put up with the fact that there were some personal attacks coming my way and at times, as you know, on social media there can be some fairly brutal ones. I really see that those sorts of attacks are just people’s inability to actually debate the issues.

Mike Pulman: Ok, but what’s the plan if the bill does pass? What then?

Paula Tesoriero: I’m still working through exactly what I’ll do. I certainly intend to be part of the conversation. I will continue to say much of what I’ve said before around my concerns, around safeguards and the way in which this bill operates. I’m really focused on trying to enable disabled people to live good lives. All the challenges we’ve got this year, the end of life choice is a really significant issue for New Zealand. But ultimately, it will be one issue, one part of a series of things I work on. I’m looking forward to the public debate. I just really hope that all New Zealanders, and in particular our community, can focus on the substantive issues and not let this become a personal attack on people, because it’s not a way through this.

Mike Pulman: What was your reaction to the NZDSN report in late 2019?

Paula Tesoriero: I’m sure like many in the disability community, I’m really concerned. I think we have a really, really serious issue in New Zealand where a whole lot of things come in a way for disabled people that doesn’t enable us to leave these lives. If you look at the poverty stats, you look at the employment stats, you look at the educational outcomes, the housing situation, and then the issues around funding for sports, we’ve got a real issue in New Zealand where we need to support disabled people better. I think that that report really highlighted some quite significant issues. So like you, I was pretty concerned, I’ve read the report a couple of times now, and it’s something that, you know, we need to continue collectively working on.

Mike Pulman: Were you at all concerned that the voice of disabled people was missing in that report? Was there much consultation from disabled people because there were suggestions that it was very much presented in the interests of providers.

Paula Tesoriero: I don’t know in terms of specific consultation. I know that in my discussions with NZDSN have always been driven around outcomes for disabled people. But there’ll always be that tension and service providers can’t and don’t speak for disabled people.

Mike Pulman: Last time we talked, you said that we need to have a discussion and cost out what it’s going to take in order to develop a system that delivers. Do you feel we are any closer to that?

Paula Tesoriero: I think that we’ve got some way to go in having the EGL principles truly embedded across government. I continue to listen to disabled people’s experiences and I welcome people sharing those experiences with me. I think that what I saw, particularly last year was the coming together of a number of really significant disability-related issues in New Zealand. I think we’re at a point in time where there’s a far greater awareness across government of the issues. I’m not convinced there are solutions by any stretch. These are the issues facing disabled New Zealanders. Here is the evidence. Here’s what we understand. So actually, there’s an onus on the government to ensure that they are adequately addressed.

Mike Pulman:  Yep. I totally agree. All right, well we’ll leave it there Paula. Thank you for joining me. I appreciate it. We’ll talk soon, I’m sure.

Paula Tesoriero: Thanks, Michael. See ya.

Saving & Sustaining Disability Supports In 2020

Buckle in and get ready folks, 2020 should be a year like no other as it pertains to saving and sustaining the disability support system. 

Before we can look forward, we must, as always, take a look back. By any reasonable measure; 2019 was a year of positive stories that should’ve aided optimism heading into what many believe will be a make or break decade for a sector all to often forgotten by the establishment.

In fact, 2019 was pretty great, really.

There was free, yes free, public transport for disabled people in the Waikato, something that was pushed over the line by local advocates. There was the emergence of The Cookie Project as a way to increase disabled employment that appears to be working and, to top it all off, Robert Martin was recognized for his services to the disability community with a knighthood on the New Year honours list.

Indeed, it was a year of highlights if you were willing to look past some of the negative headlines that were shining a light on funding challenges facing existing support systems and the viability of new ones.

And here we are, fresh into a new decade which kicks off with an election year, meaning it is the year of promises. Oh, can’t you feel the sense of optimism?

MP’s Must Show They Care About Disabled People

There will be all the usual discussion of voting and how disabled people make 24% of the population, which means every effort should be made to make the voting process as accessible as possible to the forgotten “voice”. Familiar? Yes.

There will be discussion, perhaps even a few throwing their hat into the ring, surrounding “actual disabled people” being involved in the political establishment, locally and nationally. Familiar? Yes.

Then there are the actual promises themselves, by way of policy and the visions behind such. In other words; there are the actual roadmaps, explanations and commitments behind all the meetings that will take place. Familiar? Yes.

Nothing in 2020 will be new, at least from the spoken word, but it’s the action part where the guts of whatever direction is taken will or won’t be found.

The various MP’s responsible for such matters on both sides of the house have had ample opportunity to engage with disabled people and their families about the issues impacting them, but like usual, the next eleven months prior to the polls will be when most discussions are had.

Make no mistake, there is a difference between politicians hearing and seeing the stories from their own eyes versus hearing it through reports sent by advocacy groups, representational orgs and the ministries implementing systems.

One could argue that the Ministry of Health (MoH), in particular, is coming into 2020 facing the most distrust from the disability community that it’s ever endured. How to turn that, distrust at one level and uncertainty at the core, will be no easy task.

In order to win voters, Carmel Sepuloni, the Minister for Disability Issues, and Associate Health Minister Julie Anne Genter, need to front the criticisms that came in 2019 head-on and actually discuss them.

Just how did the MoH come so close to making such radical cuts? How can disabled people, many of which make up eligible voters, trust that there is actually a sustainable system in place to ensure it doesn’t become a possibility again? How much further investment is needed, not just to cover all basis, but assume sustainability?

All key questions need to be asked because what happened in April 2019, and the lead up to it, wasn’t the MoH just deciding to be bad people and take care away from disabled people. Quite the opposite, in fact, it was something which the powers that be determined was a requirement in order to be cost-effective.

The only way to ensure such an occurrence doesn’t happen is to invest. Either that, or finally admit that the system may not be as inclusive as many would have you believe.

In their hard-hitting report towards the end of 2019, NZDSN (New Zealand Disability Support Network), advocating on behalf of providers, said that there needs to be a national discussion about what a “reasonable and necessary” taxpayer contribution towards Enabling Good Lives and what its sustainability is.

The question then becomes, if it turns out that the new system isn’t sustainable, then what?

That’s why, whichever way you lean politically, 2020’s election will likely see policies that promise a significant uptake in investment towards the Disability Support System (DSS). There will be an announcement as to the future of Enabling Good Lives, and this could potentially include a timeframe for when the “new system” rolls out nationally.

It’s hard to see what else either Labour or National can do in order to make a splash, and by any sense of scale, this is an area where a fresh coat of paint is needed. Whilst Enabling Lives may represent the great new frontier, behind how the principles are being implemented reeks of the old ways of doing business.

It all becomes about how much either party and their responsible ministers truly care about doing something in this area.

The absolute worst result would be a middling, half-baked and long-term vision that is light on detail. You’ll likely get “over three years” type of talk from politicians, but if there is no substance behind whatever is said, alarm bells should rightly ring come November.

Also, let’s not forget how political the End of Life Choice bill and Legalization of Cannabis will become in terms of the disability space if they haven’t already. These two conversations have the potential to overshadow some of the crucial questions that need to be asked surrounding how support for disabled people is delivered and sustained in New Zealand.

Be very wary of that, every effort must be taken to ensure that all voices are heard and that there are actual answers to what those voices will ask.

Ministry of Health Offers Little Assurance To Disabled Community

The Ministry of Health may have fronted, but the detail on what’s next for Disability Support Services was light and uncommitted during the latest round of conversation.

During a live stream hosted last Thursday, the Ministry of Health shared its learnings and attempted to get close to something of a vision for the future after it held public events around New Zealand that engaged with the disability community. Continue reading Ministry of Health Offers Little Assurance To Disabled Community

The Disability Conversation Must Be Open To All (Even Non-Disabled)

As a writer who occasionally attempts to delve into the issues facing the disability community, the argument of being allowed to speak about something is very real.

Whether spoken or not, the frequent rule is that your opinion only counts if you’re a part of something or afflicted by it. If you aren’t such, you should be cautious about what you say and cautioned before even saying it.

Attempting to simplify the complicated is a tough task because within that complication is often a subconscious reason and chain of history that led to it in the first place.

Five years of writing about disability issues such as funding shortages, leadership, service providers and disabled people’s sexuality has, so far, been anything but simple. It’s taught me a hell of a lot, but it’s always been a struggle.

In fact, I can’t remember a single blog or article that was simple to write and never has there been one that was simply received by what is a very complicated community. Continue reading The Disability Conversation Must Be Open To All (Even Non-Disabled)