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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Speaking of facts, here is one fact.

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

Here’s my take on the matter.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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)

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.

Keeping Promises Important for Disability Community Leaders

Recently, a friend linked me to an article that discusses the portrayal of disability in literature – and it got me thinking about the importance of disability community leaders being progressive and true to its promises.

Reading headlines like “Ardern’s broken promise to the disability community” on Scoop.co.nz might be true for one portion of the community, but entirely untrue for another.

In reality, continuing the current way of doing things will lead to similar results over the course of the next decade, or even longer. Promises must be kept, but that doesn’t just go for the politicians, it goes for the disability community leaders also.

Sometimes I wonder, however, just what that promise and subsequent direction actually is. I hear a lot, and most of it often conflicts with what other groups within the community are saying and/or doing.

That’s not to say the tide isn’t slowly turning or that considerably good outcomes haven’t been achieved already, because nothing could be further from the truth.

Just look at Enabling Good Lives, Disability Pride Week, or the recent Accessibility Concession in the Waikato that provides free public transport for people with disabilities. These three outcomes alone were built on the back of disabled people, their families and the sectors’ leadership working hard and working together.

Keeping Promises Important for Disability Community Leaders

Change, especially societal change, doesn’t happen quickly. It takes years, sometimes decades to achieve. When you add the service providers, governance groups, ministries, and lobbyists into that mix the process becomes that much more complicated. If the disability sector is to be truly progressive, all those parts can remain, but the question really is about how much time, energy and cost will be required to get better results.

At a local network meeting this week, DPA president Gerri Pomeroy said that one of the big things their organisation is working on currently sits in lobbying training and community connectedness.

Representation at the political level and having the right people in those roles is key, but it only serves one part of the puzzle. Many would argue that the disability community, particularly in New Zealand, relies too much on the “nanny state” and constantly blames the political spectrum for life outcomes disabled people are experiencing.

Those people would argue that the Government and the services they provide aren’t going to make society more equitable for disabled people – their only role is to help put the required support systems in place.

That’s where this conversation gets somewhat murky – and it’s completely open to interpretation. Just what is an equal society and what role does the Government play in that?

Robyn Hunt’s recent article in the Spinoff was a great history lesson about disability in literature. She called for “better writing” about disability on all fronts, and whilst that is very true, we also need to be better as a community of people.

Stop all the petty politics and infighting, because, for as much as we hear about how “wonderfully diverse” the disability community is, that seems to go out the window at some very crucial times – like getting that same diversity around the conversational table.

For example, many would argue there was little to no representation from either the Autism or Deaf community in the initial co-design team tasked with developing the new support prototype currently on trial in the MidCentral.

Sure, it came down the track in the various working groups, but initially, nothing. Many would say that isn’t diversity in action, and that leads to the question, who is responsible for ensuring diversity and how do you even ensure diversity?

Perhaps there is some sort of metric system I am unaware of. But if we are to succeed in promoting a diverse and talented community, then the leaders need to be equally as accountable to their own community when such diversity and talent isn’t represented. Otherwise, it’s nothing more than an empty promise.

Who’s Really Representing Disability in Parliament?

Ministers responsible for representing disability rights are having a tough go of it down in Parliament. Why aren’t more disabled people leading the conversation? 

The question of representation at a political level has long been a talking point amongst the disability sector, often one of frustration. There is a very strong belief that in order to achieve more politically, more people who actually have a disability need to be the ones doing it.

Many national organisations and community groups have disabled people in key decision-making roles already. The United Nations also have disabled-people in charge of the conversation for that specific area.

It just makes sense right, surely that lived experience and first-hand learning counts for something? It’s not just about being able to identify as someone with a disability, either. One of the biggest gripes advocates have is how the issues impacting people in the community are so often spoken for by the non-disabled, without any understanding of the real-world impacts of what is involved.

Comments by the Associate Minister of Health in response to yet more reports of funding freezes for Disability Support Services are a good example.

As concerns over continued funding cuts are raised, to hear Julie Anne Genter basically palm them off as nothing more than operational matters would do doubt have insulted many disabled people and families being impacted by what the Ministry of Health is doing.

Ok, ensuring gender pay equity and meeting demand may be seen as simple operating matters, but surely Genter can’t be convinced that adding an additional $72m for these areas alone equals results that deliver greater choice and control for how disabled people get the supports they require to simply live life?

If so, then who is giving her such advice? The non-disabled? Remember, we are talking about 24% of New Zealand’s total population.

That’s no small amount of people, imagine what the number could be had more disabled people been able to participate in the census. Imagine what the results would be had a more regular disability survey been initiated by the Government. What about the extra un-accounted extra 25% of people requiring disability support suddenly coming out of the woodwork?

Carmel Sepuloni, the Minister for Disability Issues and Social Development, gets the best grade rating from those inside Parliament. Her comments on a recent podcast where she said adding more value to the disability workforce shouldn’t, in anyway, undermine disabled people’s right to accessing quality services weren’t only obvious, but one of the more real things a minister has said about this sector in some time.

Meanwhile on the education front, Tracey Martin admitted back in April that despite significant funding boosts, early intervention for disabled learners in education had fallen short.

Who’s Really Representing Disability in Parliament?

The general school of thought hasn’t changed much over the years when it comes to who is ultimately responsible for making the changes needed to better the participation, rights, and lives of disabled people in New Zealand.

The buck stops with Government and it’s their responsibility to make it happen and stop discriminating, right?

This is just as much an awareness issue as it is one of the Ministers involved having the ability to pull the right levers at the right time to get a result that is halfway decent.

Those Ministers aren’t only not disabled, but they grew up in a society that didn’t place emphasis on those forgotten in marginalized communities.

The point being is that shifting attitudes in society goes well beyond what the Ministers are doing in Parliament, but they can be, in a big way, very effective leaders of that conversation. That current track record goes to show that there is a lot of room for doing things differently, starting with a more deliberate and frequent conversation about disability matters.

Like how Government targeted mental illness with the wellbeing budget of 2019, how do they get disability issues to be a big talking point in 2020? It is an election year so the community should expect a bit more and will do doubt get something to talk about from ministers.

Just what exactly? Well, it may just time in with evaluations and decisions on the future of Mana Whaikaha (Enabling Good Lives) quite nicely with an eye toward announcements in early 2021. That’s not exactly a vote-shifter though.

But nevertheless, go to any disability gathering of note that seeks to ask the hard questions of Government officials, usually it’s those very officials dictating the terms of conversation.

That’s what needs to change, pronto.