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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Feeling Undervalued As A Journalist?

Do you have a shutdown ritual? Do you even know what a shutdown ritual is? According to a blog on mediacurrent, a shutdown ritual is a set routine of actions that you perform at the end of each workday to finalise your day and signify that your workday is done. Many of us need that full stop to end proceedings, and for many of us, it’s also the first step to beginning the next day.

On my phone I have a routine app that features the core daily tasks I have to ‘tick off’ each day. Many of these tasks are personal, things like taking a shower and setting aside 15-minutes for meditation, while other tasks are designed around giving my brain the information ‘fuel’ I need to keep myself updated with the world around me, like reading the news for 30-minutes and checking Twitter.

But one routine focuses on prep – aptly called the shutdown ritual.

Part of my personal shutdown ritual, and one of the core tasks I try to complete each day, is setting out exactly every work task I need to complete the next day. It’s not just the task I write down on a separate ‘to-do list’ app, it’s the exact requirements of the said task.

For example, I frequently write down “write Chiefs feature in 800 words or less” if I have a story due the next day or “research stats on disability employment” if I am preparing to pitch a project to an outlet. If I need to get guidance from an editor or talk through ideas, I’ll write something like “call newsroom to discuss angle X”.

The shutdown ritual also touches on personal appointments or tasks. Does my partner need something in particular from me on this day? I’ll write down exactly what she needs and the steps I need to take to deliver.

It’s all about the detail and the pre-planning is a crucial part of both executing these tasks. It’s also a core fundamental for my own sanity. Almost always, and trust me it happens a hell of a lot, when I don’t have a productive day (or even a productive week), it’s because I haven’t taken the time the day before to list out the agenda for said day or week.

You might read a task such as “write Chiefs feature in 800 words or less” and think that it’s fairly clear cut. But for me, the 800 bit is crucial because it gives me parameters, I now know the ideal word count so can begin thinking about its scope.

My list will also set out the exact time I will submit the story – usually an hour before deadline if possible.

I believe that the same idea can be applied to just about anything you do, whether written down in an app or not.

Want to know why so many people don’t execute on their work or don’t take that next step toward something bigger? It’s not so much that they fail, it’s the lack of attention to the how. For that, I have to give credit to a former mentor of mine and fellow disability advocate Jade Farrar, during our working relationship I marvelled at just how much time and energy he put into the small things that many of us overlooked.

I also have to credit some of the professional rugby players and coaches I speak to on a weekly basis. Their amount of thought and planning on game plans, physical shape, recovery and much more just makes the mind explode when you hear about how it’s all being put into action. A guy like Anton Lienert-Brown is a fine example of that, a deep thinker about his craft and the impact being a man in the spotlight can have on those around him whilst also knowing how to switch off and get away.

Cool Story Mike, So What’s The Point Exactly?

During these ever-increasing times, particularly in our work, it’s crucial that we allow ourselves to check it all at the door but not forget our value by underselling.

This may mean different things for different people, but for me, recent times have really forced a lot of reflection on the motives and value behind what I do, particularly as a freelance journalist. Just this week I went on Reddit and asked other freelancers about their approach to drawing a line in the sand and saying no when you start thinking your hard work is being taken advantage of.

Just a bit of context. The media business is short on money right now. Newsrooms are downsizing not expanding, journalists who were previously employed are now being asked to work as contractors and pitch stories on an individual basis.

It’s a tough industry at the best of times and, sadly, many of those who only care about the spreadsheets are putting editors in extremely tough positions by forcing them to let some of their very best writers go, or at the very least, take a hefty pay cut.

But for me, I didn’t actually understand how much time, energy and effort I was putting into my work for these different outlets until I did a bit of a google on myself. When you google ‘Michael Pulman Journalist’ it should take you to a site called Muckrack which pulls together all the clips that I’ve written for the various mainstream media outlets in the past year or two.

Turns out, I’ve done a fair bit of work. Then I began to think back to the process of writing those pieces that went on to be picked up by outlets and published in print.

It came down to the work, obviously, but it was also the quality of the process that was put around those particular articles. Few of those articles were rush jobs, looking back at my to-do lists from those particular dates showed me that I had taken the time to perform that shutdown ritual where I had the patience to map out, 1 what the task was, 2 when it was due, and 3 what the parameters for it all were.

Being a freelancer in an ever-competitive media space often makes you feel like you’ve got to be on the button constantly, ready to pitch a story at a moments notice and do it before anyone else, then get it written and out the door within an hour or two so it’s timely.

Some of that might be true, but a lot of it is also complete bullshit. Being timely on a piece doesn’t make it good, keeping up appearances might help forge good relationships, but the real work is often done in isolation where the outside influences don’t help deliver the final product.

You deliver the product, nobody else really holds you accountable if you are a freelancer. If you do deliver and hold yourself accountable to everything that’s involved in doing something of quality, you’ve got to understand that there is some real value in that.

When I posted on Reddit I asked a very simple question to some fellow freelancers.

Would you do all this and not expect to be paid? Would you provide that scoop and a quality, thought-provoking read for little more than thanks and handshake?

Sooner or later, you’ve got to flick that switch and stop beating yourself up over the things you cannot control. Speaking purely from the media landscape for a moment – you’ll likely have a hundred doors closed on you before one eventually opens a bit.

Guess how many times I had to work for free before any doors opened? I estimate that I’ve worked for free for well over three of my six years working in the media industry.

The doors started to open when I focused on the story, not the number of stories. As a freelancer, I’ve so often been guilty of focusing far too much on volume as opposed to value. If you’re motivated by volume and nothing else, you have no room to improve. I want to improve, I want to be the very best I can be at what I do, and yes, I want to feel valued by the outlets I write for.

So if you’re out there and you’re in a similar boat to me, please know you’re not alone. If you know you’re doing all you can then there is your value right there. Please do all you can to ensure your work is valued.

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

So-Called Disability Funding Increases Help Nobody

A growing sense of déjà vu and justified frustration can be felt as funding shortages for disability support services show no signs of slowing down – and one of the Ministers involved doesn’t seem to care. 

Disability support providers have once again aired their concerns over Government funding, or the lack thereof, in wake of the Ministry of Health detailing how its $72m financial expenditure needs to be spent this year.

Priorities for the expenditure are gender pay equity and meeting the growing demand for disability support services.

Service providers are unhappy and will continue to face the growing prospect of having to shut down completely in the future. Where this leaves the disability sector and the landscape of service provision is the million-dollar question, and it continues to spark much debate as everyone searches for a way forward.

But ask the Associate Minister for Health Julie Anne-Genter what she thinks and she’ll downplay the situation to nothing more than a matter of operations.

Much of the reaction on social media is calling for sector representatives to ask tougher questions of Ministry officials. Meanwhile, some providers and National Group Organisations (NGO’s) are also not immune to the growing criticism within the disability advocacy space.

Their structure is in question and there is a call for greater clarity surrounding expenditure with growing concerns about exactly how the Government’s financial injections have been used over the years, apart from simply providing services and meeting the rising operational costs.

CCS Disability Action, one of New Zealand’s biggest service providers, and the Disability Support Network (NZDSN), the national umbrella for providers, have both featured heavily in media coverage surrounding the issue of substantial funding shortages impacting the disability sector.

They say that the costs of supporting disabled people are rising and that the recent $72m funding increase for service provision won’t provide the adequate cover to deliver on contracts. The apparent effect of that is fewer clients being accepted by providers, leaving little to no alternative for many seeking specialized supports.

Perhaps this is why the Government announced fairer pay deals for some family caregivers?

According to concerns raised by providers, an increased financial deficit (said to be between $150 – $200m) is also impacting on the further continuation of other important aspects of their work, such as advocacy groups and accessibility work with local councils.

But the questions and the doubts remain as some advocates question the expenditure within these organisations as well as the strategic priorities year-to-year.

Most service providers have a paid board, chief executive, and management staff. Their general mission includes (but is not limited to) providing quality and specialized support services for disabled people and families as well as the sufficient professional training for frontline workers. The concern is over where this sits against the other priorities.

In other realms of social media, some asked why the voice of disabled people and families haven’t been included in some of the media coverage, including a report by RNZ on Monday.

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According to the letter dated 3rd July sent to providers from the Ministry of Health, the priority for funding expenditure this year will be “achieving gender pay equity” and “meeting growing demand”.

Recent claims in the sector back up the concerns around demand raised in the MoH letter, with an estimated extra 20% of unidentified supports having come to the forefront since the launch of the Mana Whaikaha Enabling Good Lives scheme in the MidCental region.

Pay equity pressures have also increased due to the higher minimum wage that took effect in April 2019, this on top of the already rising costs associated with the caregivers pay equity deal.

To play devils’ advocate, one could argue that despite the increase in overall funding sector-wide, providers still face the same issues they did prior and that the direction of where money can be spent doesn’t address the problem. There is also the costs of transport and accommodation, holding meetings with key stakeholders, and all the other usual costs associated with running an organisation, often both with a national office and several smaller regional bases, all of which have those same costs in addition.

Is it any wonder that providers such as CCS Disability Action are expressing anger? In 2016, CCS undertook a nationwide overhaul to re-prioritise how it operated regionally with much more top-down emphasis. Many other providers have done the same and almost all of them have felt intense pressure to cut costs wherever possible.

In April, that pressure increased even more so when MoH was said to be “cutting services by stealth” before being stopped at the last minute from making even more radical changes to funding which would’ve seen $10m in cuts this year and a further $20m next year.

But ask the disability sector and you’ll be told that the support cuts are still continuing.

There is little doubt that the financial strain faced by the disability sector will be one that goes on for some time. Many have become fed up, and if you read between the lines of what the Ministry is attempting to do with its expenditure guidelines, their direction seems to be that of bringing more disabled people into the support system without fully measuring out the costs to support them.

Does anyone else get a sense of déjà vu?

Many who’ve previously denied that the disability sector is in a deep financial crisis are now starting to ring the bells for change, frustrated that ‘all the talk’ is leading to continued poor outcomes. There is a greater willingness from many to question the status quo, and most agree that the disability sector is in a deep financial crisis, one that has been going on for years it seems.

Simply saying so doesn’t begin to address finding a solution, both to the financial issues at hand but also the varying levels of silo within the disability sector itself

Disability Funding Increases Aren’t Actually Helping Anybody

For every small victory, it seems the disability sector is presented with another injustice from a Government (and previous Governments) that is keen on supporting the now infamous “nothing about us without us” disability narrative.

The reality is this. Decisions are being made above and beyond the concerns raised, not just by providers with financial obligations to meet, but by a growing number of disabled people on the ground.

This is not simply down to operational matters and expenditure, it’s about a willingness to engage in an on-going accountable dialogue between all parties. Substantial structural change may be required across the disability sector and who knows what that will look like because, for New Zealand, it will be completely uncharted territory.

The UN found New Zealand to be more than a little lacking on upholding the rights of persons with disabilities on nearly every front and it’s an embarrassment that the accountability of that seems to be a one-way ticket to nowhere.

Children in State Care Living with more than just Abuse

There is no excusing some of the practices by Oranga Tamariki, but the issues impacting children in New Zealand state care are going hand in hand with rising poverty affecting more families.

The ‘chickens are coming home to roost’ for Oranga Tamariki in 2019 as a long-running blight in New Zealand’s state care reaches its tipping point. Reports released by the Ministry of Children show that over 300 instances of neglect, emotional harm, physical and sexual abuse, and emotional turmoil were inflicted on children under state care over a period of just six months.

One aspect of this report showed that Oranga Tamariki staff members were found to be some of the abusers in question.

Surprising and shocking perhaps? Not really, in fact, this has been a long-running concern.

The conduct of Oranga Tamariki social workers and decision makers should be called into question; the evidence found in this report points to many things, firstly, a clear lack of care when it comes to where some children are being placed.

One has to assume that the proper process is taken when it comes to background checking and assessing the conditions prior to placing a child with a particular caregiver and their family. Yet, the report shows that both family and non-family caregivers are the abusers more often than not.

But what of the Oranga Tamariki workers who’ve been perpetrators of abuse? That’s where conduct comes into the equation.

There are many examples of children being uplifted from families without the proper processes being completed beforehand. Are these isolated incidents? Perhaps, but poor conduct in a situation like uplifting from families is bound to cause further psychological harm to children, especially those more cognitively developed.

Children in State Care Living with more than just Abuse

Whatever the case of poor process, and it appears there are many when it comes to children in state care, calls of an organizational-wide shakeup have been coming for many years.

Part of the problem is the skill of the social workers that Oranga Tamariki brings into its organisation and the lack of accountability for the lack thereof. Every week, there are dozens of social worker jobs advertised and this points to two things; a greater supply of workers in order to keep up with demand, but also a growing risk of quality versus quantity.

Like many sectors, you can have as many workers as you like, but if the general quality of the work being done is sub-par, that sector will continue to achieve average results.

Children in New Zealand’s state care sector deserve better than average. Almost all of them didn’t choose to be in the positions they find themselves in, and the scary thing about this report is the suggestion that they may be in equally as bad or even worse situations of harm than before.

A new set of National Standards will only go so far in addressing the chronic issues that have proven life-long effects on children in care.

That’s really the bigger point. We want New Zealand’s next generation, with all the technologies available to them, to be able to thrive and live their lives with the best footing possible.

Hence why New Zealand needs to address its growing poverty issues, like the overpriced market rentals for instance. Families struggling to get by, many of whom are working and not making ends meet, end up with their children in state care. The pressures of not even being able to make it from week to week are a big factor in emotional trauma that can lead to drug abuse and the likes.

Oranga Tamariki is doing nothing to either address or advocate for certain issues. It may not be their role, but if they want to re-innovate themselves, they need to look at these factors and take a closer consideration into how they may be impacting on the families where they are placing the most vulnerable children into.

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