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.

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.

Climbed Over At All Blacks (Diaries Of A Disabled Journalist)

The Diaries of a Disabled Journalist, Edition One.

It’s Friday, June 10th 2016 and I’m about to get climbed over at my first ever All Blacks press conference. 

Eden Park’s glorious grandstands are completely empty. It feels like a ghost town as I roll across the hallowed turf in my wheelchair. We come out of the west side tunnel and negotiate our way to the middle of the field. It’s just me, an NZ Rugby official and a couple of overseas journalists, presumably here covering the Welsh tour.

Wow, I think to myself, I’m actually on the field at Eden Park.

It starts to rain so I retreat under the stands and it’s not until I’m parked that I discover I’m actually in the players’ tunnel. This time tomorrow, All Blacks players, television crews and security will be everywhere and I won’t be allowed anywhere near this close to the action. I decide to make the most of it and take a nervous look around.

Unlike tomorrow, there is nothing here right now, it feels just as lifeless as it did out on the field. A few cables line the green matted floor, to each side of the tunnel there are two long corridors which lead to the respective dressing rooms where the All Blacks and Wales rugby players will preside.

Wales are already here, but only just a couple of their kickers and an assistant coach. I say to hell with the rain and head back down the tunnel and out onto the field. Dan Biggar, the Welsh first five, is taking practice shots at goal so I park next to the sideline and take a few photos and one poorly shot iPhone video of his routine.

Then it’s time for the first interview of the day, with the Welsh assistant coach.

It’s about 11.00 am, I’ve been up since 6.00 am and in work mode since around 9.00 am. The 90-minute drive up the Waikato expressway from Hamilton is spent writing my first story of the day on my portable table, lodged between the front of my wheelchair and locks which hold me in place.

Today’s first story is a preview piece focusing on how Wales will go against the All Blacks. By the time I get to Eden Park, all that needs to be added is quotes from the impending interview, and as expected, the little that the Welsh assistant coach actually says doesn’t derail the tone of the story and force a total rewrite.

From there, the few of us journos who bothered to show up are then directed into an underground holding room back on the west side of the ground. Inside it’s cold, empty and certainly no sign of food or hot drink. This doesn’t go down well considering it’s the middle of winter and very cold.

I take the nearest available desk and begin scrolling Google Images for a decent photo of the Welsh assistant coach we just spoke to.

Unlike my counterparts, I don’t work for a mainstream media organisation so I don’t get the benefit of accessing the library of professional photos that were just taken from the practice session we just saw. I find the most recent and best-looking image I can find, add the quotes into the WordPress article draft and hit “submit for review” where I hope an editor in the US or Europe finds it quickly.

That hope is disappointed, the story doesn’t get published until later that afternoon, well after my mainstream media peers have already had theirs go live. Oh well, I think to myself, their work is probably going to get more views anyway and this is really an opportunity to practice my craft.

It’s now around 12.30 pm and we now have to wait for the big event of the day, the All Blacks captains run where we get to interview the new skipper, Kieran Read.

The term “holding room” to describe where the media contingent was placed is indeed accurate, and after nearly two hours of work and the occasional stop for chatter, we all begin making jokes about being animals locked in an enclosure until feeding time.

The feed we seek, of course, is that big interview with the new All Blacks captain and we all have a list of questions we all desperately hope to fire at him.

Another hour goes by, and finally, we are let out of the enclosure. The All Blacks are on the field, training intensely. Most of us have our eyes locked on that, but a turn to your left and you notice that the stand is scattered with members of the public who’ve been given the opportunity to come along and watch the final practice before the match. This scattering features kids, parents and a whole lot of sponsors. A Japanese group is lucky enough to have even closer seats to the action, they’re down on the field with us and currently huddled around Sam Whitelock as he practices some scrum work.

Julian Savea, the powerful All Black winger who has so often been compared to the likes of Jonah Lomu, runs over to retrieve a ball that lands close to me. Bloody hell, I think to myself, he’s a bloody big unit but his intensity in the face is about as confronting as his physical stature. He doesn’t take his eye off the ball for a single second as his ranging arm comes down and scoops the ball up. I smile and nod at him, but he doesn’t notice. Just looking at those eyes you can tell, even at training, he’s in the zone.

I see little of the training on field because the media contingent, now sizeably bigger than before, has set up shop with their cameras and I don’t have a hope of wedging my wheelchair into the line. Balls are flying everywhere, the kids in the stands are yelling and cameras are flashing. It’s an absolute hive of activity.

“Hey Joe,” I say, “can you please let me know when Kieran is coming over so I can get in position?” I ask quietly to the media manager. He smiles, “sure mate I will let you know”.

Joe, being the man responsible for setting up the media conference and the guy who brings the All Black captain over to us journalists, doesn’t let me know. Out of sheer luck, I spot Kieran walking over and race toward where he’s headed. I park at the front of the media pack, directly behind all the microphones that are already set up.

Kieran walks over, smiles at me and says hello, then the interview begins.

One journalist literally climbs over the side of my wheelchair in an attempt to get closer to Kieran. “Excuse me mate”, he says as he manoeuvres himself over me. He stands directly in front me after that and all chances of getting a decent photo and video are gone.

A second journalist does the exact same thing a minute, and then a third. It’s more than a little belittling, but I’m so caught up in the moment that it didn’t actually register how disrespectful and downright discriminatory that was.

I have it on good authority from NZ Rugby that up until that point they’d never had someone in a wheelchair as part of the media pack before. It is just as much of a learning opportunity for them, and as much as something like that would enrage a lot of disabled people, I take it on the chin and make the best of the interview with Kieran that I can.

In fact, I even manage to ask a question of the man tasked with arguably the toughest job in New Zealand sport. It made the early rise, the ordeal of sitting in the holding room and the frustration of being climbed over, all worth it.

After that, I’m back in the van and we are heading back down the expressway to home. But work is far from over. My laptop is open and I am doing two things at once as we hurtle out of Mt Eden and greater Auckland.

Firstly, I plug in the recorder and begin listening back to what Kieran had to say, typing quotes into a word document. After I’ve picked four quotes, I begin writing the story. At the same time, I’m on Twitter posting photos and quotes from Kieran onto my timeline, looking at what other media outlets are doing just in case I’ve missed any crucial details, and I’m also texting a New Zealand-based editor to see how quickly he can get the story online.

By the time we hit Mercer, a small town south of Auckland, the story is done and ready for editorial.

Two stories, check, but a third is yet to come. I need to turn both these stories, the Welsh angle and the All Blacks angle, into a column that needs to be online tomorrow morning. We get back to Hamilton just before 7.00 pm, I quickly go to the bathroom and then eat, before opening up another word document and typing that crucial third story.

I finish writing at 10.00 pm. Sleep isn’t just easy, it’s automatic.

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.

Crisis Mode: NZ’s Poorly Planned Disability Transformation

Little over a year since the newest big pilot launched, one of New Zealand’s biggest players released a report stating that the disability support sector has entered full crisis mode.

NZDSN certainly pulled no punches in its latest report, stating that “the disability sector is in crisis at every level” in an explosive overview that estimated $574m shortfall in funding.

Whether you agree with the report or not, you’d be a poor fool to say that it simply reflects the financial interests of providers and attempts to scaremonger the Government.

The proof of the effects this funding model is having on real disabled people couldn’t be clearer.

Such reading makes a mockery of the “nobody left behind” and “choice, control, flexible” values that have underpinned the most ambitious change to disability support system since the closing of the large institutions. If anything, the uncertainty and stress on the system matches (if not beats) that of what was experienced in the nineties and early 2000s.

NZDSN estimates 15,000 people within the regions where new support pilots are taking place (Waikato, Christchurch and the MidCentral) have missed out on getting some kind of disability support.

15,000 people, more than a handful (making somewhere around 25% extra unmet need) in an approach where $24m of taxpayer money was spent on development.

But what exactly was designed and how well was it actually developed in the first place?

That’s the question that will be asked by the appropriate parties, and as much as it seems that they will be the ones tasked with easing the uncertainty ahead, they were let down by some pretty shoddy advice and a clear lack of awareness from those disability community representatives that themselves forgot about or didn’t understand the reality that was burning below the surface.

Chaotic Feeling Underpins Life In New Disability Pilot

Words like “try, learn and adjust” that came out of the MidCentral project were as clear a sign as any that there were few answers on what to expect, but more importantly, they provided absolutely zero clue on how to address the issues that were coming.

Just over a year since launching Mana Whaikaha, the feeling on the ground in the MidCentral has been described as one of chaos after long periods of time with deep-rooted uncertainty.

Such sentiments are echoed in previous and ongoing work in other parts of the country. The Real Michael Pulman understands that connectors in the Waikato have been told that their jobs are only certain until June 2020, with further announcements not expected to be made until earlier in the year.

In his interview with RNZ on Monday, NZDSN boss Dr Garth Bennie was exactly right when he said that the pilots were originally about testing the designs, offering disabled people a choice of their supports rather than taking from a set menu.

One must also ask how cutting runaway costs could possibly have ever been managed with the growing demand not being a prospect, but a certainty. To even attempt to answer that, there needs to be an honest admission about what was going on behind the scenes.

It was never simply about “Enabling Good Lives” for disabled people and their families. It was about attempting to adhere to a set list of principles and do it with very little to no extra funding with tangible impact in the long term.

What’s been a constant reminder in 2019 is that disability support services are flying blind into the future. Perhaps this was always the case, perhaps this is identifiable in the wider health and social service sectors, but it’s dangerous to assume that small parts of the country can successfully show enough result to transform a system nationwide.

And yet, that’s the very assumption that’s come from all this, whatever is happening in these new spaces will soon be the status quo for all. It worked well for persons X, Y and Z so let’s build on that and repeat the formula.

There is merit in arguing directly against that. The poorest outcomes in the new pilots should be the examples used when decisions are made about what to do next.

That’s not all positive and rosy though is it? Now more than ever there seems to be much logic in stopping, having a big rethink and getting it right if the basic human rights of many disabled people are to be met.

All that starts with an admission that what we’re doing currently just isn’t working.

NZDSN REPORT: https://www.nzdsn.org.nz/wp-content/uploads/2019/11/NZDSN-Sector-Briefing-Final-14-11-2019.pdf

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)

Disability’s Leadership Achieving Mediocre Outcomes

We in New Zealand’s disability community desperately need something to change because the frameworks in place are clearly not having the desired outcome that our leaders say that fight so hard to achieve.

Yet another damaging report into the state of New Zealand’s health and disability services sector was released last week, highlighting a sorry trend of underfunding and a lack of leadership across the board to address it, amongst many other things.

What’s worse is that no disabled people were involved in the official Health and Disability Review Panel that conducted research and produced the 300-page report, confirmed to me by various sources.

Nothing new for a major disability issue then, just more non-disabled people talking the talk.

What a sorry state of affairs it is, what a poor reflection of a disability community that has so much more to give than what it appears to be giving. This poor reflection is a symptom of many wrongs, but don’t just blame it on that big buzz word popularly referred to as ableism, take a look at what the report actually says.

The lack of decision-making frameworks and subsequent lack of accountability due to the confusion isn’t just a flashy sentence in this report, it’s true to one of the biggest issues present in the current system.

I hear your counter-argument, “oh but the ignorant non-disabled designed it so it’s ableist”. Incorrect, you’re attempting to simplify a truly complicated problem.

The inequity of outcomes in this, a system that strives to “leave nobody behind”, sure has left many behind and has been consistently under-resourced and poorly managed for years.

Just as it was in the 90’s and early 2000’s when the powers that be realized there wasn’t enough support workers, housing, or funding resources for the hundreds of disabled people formerly in institutions such as Kimberly, the last few years have presented similar challenges as systems have tried to reinvent themselves.

What we’ve steadily seen is that the capacity to deliver on the promises of greater choice and flexibility has been seriously stretched, now at a point where it’s becoming impossible. Take the small portion of disabled people and families lucky enough to be experiencing the best of new person-centred support trials like Enabling Good Lives and toss it to the side, we are talking about a drop in the ocean.

Those are the cold hard facts and don’t let the flashy dressed insider’s tell you any different.

Disability’s Leadership Achieving Mediocre Outcomes

As I wrote back in April, serious accountability needs to be put on the self-elected leaders who represent the voices of the disability community. What exactly are they saying in the ears of ministry officials? Are they actually getting the chance to say much of anything at all?

When I spoke with the Disability Rights commissioner back in May, she urged the sector to come together and figure out what it really takes to cost out and design the system it’s hoping to deliver for disabled people. Those comments might be obvious but they are in themselves a solution because some of the poorest outcomes delivered in a system that is currently not resourced adequately are in some ways indicative of the wider problem.

My guess would be that Ministry agencies deal in dollars. After all, it’s the financials that drive all areas of Government, or are we still stuck in the old mindset that a marginalized community simply presents its case and the resource to deliver on its needs suddenly appears like magic?

The kicker to all this is that here I am writing this piece as a self-identifying disabled person. That’s relevant and let me tell you why.

I’ve had my faith in this system and our leaders for a long time.

Do I get any other choice? No, actually I don’t. For me and many like me, the average every-day disabled New Zealanders, we the rely on professional, flexible and adequate support that hasn’t been effectively costed out due to rushed and conditional guidelines in its design.

I can tell you that a lot of us have no choice but to bend to the realities of that system, and whilst it is better, it’s entirely unthought out.

The caregivers pay equity deal being a fine example. How many disabled people do you know being impacted by this? We didn’t choose to give support workers such appallingly low pay rates to begin with, because we had more faith in the importance of the work that these people did.

Yet here we are in the reality that staff turnover is still high, perhaps even higher, and here we are in the reality that uncertainty is really the only key expectation for the disability support system.

Sound familiar? If our leaders were doing what they are tasked to do, we would at least have some clarity about what’s next. Then again, maybe a few out there are lucky enough to have such information.