We Have To Stop This: An Open Letter To The Disability Community (and Huhana Hickey)

Can’t see Huhana Hickey’s comments? That’s probably because they’ve since been deleted, or you’ve been blocked. That’s what happens with this sort of thing, the evidence gets deleted to cool the jets on a hot issue. That’s social media. It’s too easy (and frankly too acceptable) for us all to insult each other.

I know that because I used to be the master at doing it. I want to start with that unquestionable fact. I also want to acknowledge one thing from the outset of this blog.

I fully accept the mistakes I’ve made in the past when it comes to some posts I’ve published about New Zealand’s disability community, and specifically, a few of the people within it. At the time I felt justified and correct in what I’d said and posted, but do I look back and wish I’d done some things differently? Absolutely.

Nobody is perfect. I am the least perfect person I know and I think my track record can attest to that.

Every person I’ve ever met in this community has by and large been fighting for the same goal, and every one of these people have faced a high level of systemic injustice. That injustice fuels me to a great degree, it does make me angry, and it did once consume me.

It got to a point a couple of years ago, after falling out with a mentor, someone who I considered a good friend (almost a brother actually) where I had to look at myself in the mirror and ask if it was worth it.

Asking that question is the easy bit. Taking time away, going offline, telling yourself (and others) that your done, whatever, that’s the easy bit. If you’re only doing that you aren’t actually making a change at all.

I knew I’d made mistakes, I know he had made some too, and I knew that my hopes of getting back to the public speaking stage were probably gone at that point. I’d probably lost one of the only ally’s I had left.

It hurt, a lot. I had to own it.

I also felt a great sense of frustration toward our community, because it felt like we were all fighting each other. I felt that me and this person should have got into a room, without any influence of the third parties that were always present, and just hashed it out, like men.

I chose my mental health, deciding to take the very deliberate approach of stepping away from the disability community (especially in terms of advocacy) and focus my full attention on my work in sports media.

I think I made the right decision because now I’m getting more regular work than I ever have before. I’m busy each week, with deadlines to meet, people to interview and invoices to send.

To tell you the truth, I’m loving it and I’m feeling a real hunger to continue solely in this space. And I can tell you this, writing about rugby for a living might just be the simplest thing I can do moving forward, because I don’t know if there is any coming back now.

I wanted to start there and preamble my way into talking about the events that took place this week regarding a story I wrote about accessibility onboard the upcoming Te Huia commuter train between Hamilton and Auckland which, surprisingly, didn’t appear to go down well as anyone of us would have hoped. I want to address my comments about Huhana Hickey, and the specifics around that.

In terms of the specifics, here are the facts as they happened:

  1. Waikato Regional Council invited me onboard the Te Huia to provide feedback on the accessibility after two members of Waikato’s disability community recommended me.
  • While on the train, I asked several questions about the development of the accessibility, future plans, and how disabled people could book their place on board.
  • After speaking with Waikato News, a publication I’ve written for in the past (owned by NZME and a part of the NZ Herald), we agreed it would be a good idea to write an opinion piece rating the accessibility and my own personal thoughts on Te Huia.

(It’s worth pointing out that an opinion piece in news journalism is just that… somebody’s opinion and analysis of a certain topic).

  • On Friday morning, the day after publication, I had several screenshots sent to me by members of the disability community regarding comments Huhana Hickey had made about me on the Accessible Travel Facebook Group.
  • I was then notified by a Hamilton City councilor (a contact I’ve interviewed before) about a series of Tweets that Huhana Hickey had put in conversations, labelling me “mis-informed” and “disablist”.

The latter of those two labels is what lit a fire in me to speak out, and not for the first time when it comes to Huhana Hickey who’s publicly insinuated that I was a supporter of the gas chambers back in the Hitler reign for my choice to vote yes during last year’s End of Life Choice referendum.

After that experience, Huhana blocked me when I raised my concerns about the comments and asked for an apology.

Since then, her comments about me haven’t been just a couple of isolated examples here and there, but a pattern of behavior where disparaging comments about me have been made across several videos, posts, and on message boards, I do feel the need to defend myself and my credibility.

If it was just a few examples, ok I can live with that because criticism comes with being as outspoken as I have been in the past, but when it’s clearly opportunist and not genuine (because this isn’t really who Huhana is in my view) I start to have a problem.   

Have I been guilty of the same sorts of things in the past? Absolutely. But I was always up front about who I was speaking about and never hid from that by not allowing whoever it was I was talking about to see such things AND respond.

If I felt I went to far, or was told on no uncertain terms why I was wrong, I would delete posts.

What Huhana has done is block me so I’ve got no retort and continue to put down my credibility.

Only because of others have I come to learn of this. It was a friend in the community who sent me a video where Huhana made her first comments directed at me, where the host sarcastically asked “oh I wonder who that could be?” while knowing full well the connection the audience would’ve made.

Only because of others this week did I learn of the comments calling me mis-informed, unqualified to access the accessibility of the Te Huia, and labeling me a disablist.

Sounds petty doesn’t it? That’s because it is.

My point of speaking out in this blog is to encourage the disability community to stop this sort of behavior from happening. You called me out when I was wrong in the past, you need to call out this behavior too.

We must stamp out the narrative that underpins this sort of behavior. We must be YES BUT people. We cannot afford to be NO BUT people. Don’t simply call others mis-informed because they might not be your personal cup of tea, because you disagree with them, or believe they are wrong in any way.

Lastly, I want to thank those of you who messaged me over the weekend to give your views. The majority of the messages have been supportive and for that I’m truly grateful. Some have asked for the specifics, and I’ve provided them here.

We are better than this people. I hope that next time I try to do something good, from a genuine place, for the community I belong to, the feedback might be more positive.

Enabling Good Lives? More Like The Untrained Middle Man

First thing’s first. This blog probably won’t make sense. Today I’m feeling depressed, anxious, and more than a little tired.

If there is anything I’ve learnt over the years it’s that feeling down is a genuine part of the human experience. Cliché terms like “it’s ok to not be ok” are so repeated these days that the first natural step to countering the feeling of being down is to tell yourself it’s ok.

In fact, it’s a sentiment that is almost ingrained in us at this point.

But after a good week or so of feeling a bit down and telling myself it’s ok to be feeling this way, I haven’t exactly pulled myself me out of the rut in ways I would’ve liked. I actually did some self help on Google by searching how to get out of a rut earlier today – which then led me to spending a solid hour writing a two-page document of all the things I’m feeling, good and bad.

I started with the bad because, naturally, that’s been how I’ve felt as of late.

I then stared at the document, and it didn’t take me long to work out why I’m feeling the way I do. It’s not work stuff, nor is it anything too personal. An inherent realization has dawned on me in recent days, and it’s one I’ve had before.

Here’s that realization:

Enabling Good Lives, as a concept, simply isn’t achievable. Now take that with a grain of salt, because it is just one opinion and it comes from a place of frustration. The frustration is the value part of Enabling Good Lives, because what is the actual value here?

At its core, Enabling Good Lives serves to help disabled people manage their support system, by way of their own budget which pays for said support.

What it doesn’t do, at least in my view, is provide the actual tools to understanding how responsible one has to be in order to do the managing part. From its very conception, I was always told that Enabling Good Lives was a way of removing the middle man and truly taking control of support is a requirement for most who live with a disability.

That support can be mild or intense, but the big mantra is about putting the person at the centre of it all. My question is this:

Do we actually understand what that looks like in practice? Maybe my situation is different to most because I come under the “high needs” category, but I often feel like the middle man at the centre of it all, as if the responsibility for delivering the services has shifted away from others and landed squarely in my lap in some way or another.

Do I like that? No, not really. I’m fully prepared to admit that I strongly dislike having the responsibility. If I am to buy into the values behind Enabling Good Lives, I’m meant to be in charge of it all and be self-determining my own life right?

Wrong. That’s not how it works in practice. How it works in practice looks like this:

You go for weeks, sometimes months, without hearing from anyone who actually works at Enabling Good Lives (or the Ministry of Social Development to be accurate). There is the odd check in, you’re told to just ring if you need anything. Other than that, the silence is truly deafening.

It’s assumed that everything is ok, or at least that’s how it feels.

But as soon as there is a budget issue, like when you overspend for a month because you racked up HR time advertising for and hiring a new worker, you’ll be hearing from someone pretty quickly.

Maybe that’s what triggered all these feelings I am having. I felt guilty for overspending. Typically, I let others manage the budget side of things. That’s what they are paid to do, and yes, when it comes to hiring a new worker, your costs will go up for a period of time on the HR front.

So why does it feel like my fault? Why do I feel like I’ll be punished for it someday soon?

It goes without saying, as a disabled individual with high needs that evolve from day to day, I’ll probably only be needing more support as life goes on. Right now, that makes me feel incredibly anxious, almost guilty, because I can foresee the inevitable conversation about managing my support budget, which really means cutting back not getting more.

This is not Enabling Good Lives, nothing close to it. Last week I had a conversation with a fellow participant who also manages his own support structure, and I asked him how he’s finding the process.

Here’s what he said:

“Honestly Mike, it’s been really stressful.”

I can relate. There are so many cogs to the wheel, and from my experience, it only takes one of them to go slightly awry and the whole thing comes down. It is an inherently stressful exercise where you are the middle man.

As an Enabling Good Lives participant, I’m given the ability to manage my support structure. What I’m not given is the tools to understand what that really means on a day to day basis.

That’s something I have to teach myself, on the fly.

I Can’t Quit Social Media, But I Can Do It Differently

Like a lot of you, the thought of logging out of all my social media accounts and “disconnecting” has flashed through my mind a lot as of late.

Also, like a lot of you I’m sure, I was left somewhat shocked by what I learned when watching “The Social Dilemma” on Netflix recently.

Even if you aren’t on the major social media platforms, or perhaps you are and you don’t feel being on them is a problem worth considering, I’d highly recommend you take a look at the documentary.

“The Social Dilemma” doesn’t necessarily expose these tech giants for their happy willingness to do all they can to keep our eyes glued on the screen, but it confirms what some of us probably already knew if we really stopped to think about it in the first place.  

I certainly don’t like to think of myself as some sort of lab rat being experimented on, but in reality, it’s hard to argue that these social media platforms all largely started out as experiments and took off to heights that even their own developers didn’t imagine.

Sure, any business is an experiment at its beginning, but few have the potential to contribute to the negative impact on our mental health that Facebook, Twitter, and yes, even Instagram can have on our population.

Anyhow, I didn’t start this blog to write a review of “The Social Dilemma” or try to convince you that social media is bad, I want to talk about why I’m going to make a consolidated effort to lessen my time on the socials and what that could look like.

I Can’t Quite Social Media, But I Can Do It Differently

It seems somewhat disingenuous to make bold claims of lessening my time on social media, whilst at the same time writing this blog and sharing it on social media for you all to read. How else would I share it? Send a link out via an email? Maybe text it to my closest friends and family?

No, quite honestly, the only place to share a blog is on your respective social media timelines and I can guarantee that it’s on social media that you came across this in the first place.

This blog is probably one of a few things you’ll read online today, so no, the answer for me (a freelance journalist and experienced blogger) is not simply disconnecting and walking away because I’d effectively be putting a bullet to my career.

Social media is here to stay, it’s likely only going to increase I’d imagine, and it’s definitely going to be a requirement for those of us who work in the information/news/distribution spaces.

So, I’ll be sharing the content, monitoring feedback to it, and doing by best to respond to intelligent comments, but I’ll also be finding a way to utilize mass sharing using services such as Buffer or Hootsuite to do the distribution part.

But why? Why, for me personally, is limiting time on these services scrolling up and down such a bad thing? Surely, as a journalist at the very least, I need to be connected and up to date at all times?

I hear and take your point, and this is the very reason why this “experiment” to reduce time on the socials isn’t exactly knew. I’ve tried before and failed.

For me, and I wonder for a lot of you who may either be in similar situations or are considering taking on the challenge of less time on social media, it’s not a matter of disconnecting altogether but radically changing up your time on Facebook, Twitter, and especially, Instagram.

Maybe it’s just me, and let be completely honest for a moment, as someone with diagnosed depression and anxiety I’ve noticed that Instagram is a major trigger for a meltdown because it visually shows me what is often the “best” of what others are doing or the “best” of what they have going on.

So, I started this “experiment” by logging out of Instagram and I’ve promised myself I’ll only check in once every other day. That feels like a good place to start as its Instagram which seems to trigger the most.

This morning, instead of checking Twitter and endlessly scrolling through my lists (in my case, curated lists with the latest in politics, rugby, gaming, and disability) while having breakfast, I decided to just use my screen time looking at the actual news apps to see what was breaking.

There is something odd about using Twitter, a platform that is becoming more and more clouded with mis fact and division, as the first place to get my news each day. Ok, granted, I’m fully prepared to admit that using Twitter will often take me to the same official news outlets anyway because I come across a story that I need to read (both out of curiosity but also because of my profession).

It’s just the other stuff that I could so without at this point in my life. I don’t need to hear about everyone’s reaction to the news, I don’t need to see why you agree or disagree with something that Jacinda Ardern said today or why NZ Rugby is a monster organization in desperate need of change.

What I do need is time to breathe, room to concentrate on my work which as a journalist, blogger and part time communications assistant, requires discipline that clouded, information overload with a side of some 1000+ live reactions flashing across my screen simply doesn’t provide.

I’ll start here. It isn’t about disconnecting, I won’t do that, I will check in a few times a day and continue to share my latest yarns, but I’m certainly not going to be scrolling up and down trying to find ideas for the next thing or using these platforms to latch onto others who can increase my professional cred.

Everyone, it seems at least, is an entrepreneur on social media these days, myself included in large part. Our thoughts have become the primary driver behind it all, and it’s what creates so much division, because how can we disagree and still respect one another when there are no parameters to what we can share?

I’m not saying that you shouldn’t be on social media. I’m saying we all need to put more time, and more value, on something that is beyond that screen that almost never leaves our side.

When writing this blog, it’s a beautiful sunny day outside. I spent my time between pages by taking a stroll down the street and enjoying the fresh air. Nothing happened, my career didn’t suddenly end. It felt great, maybe because spring is here and I’m feeling different.

Diary Of A Disabled Journalist: Good Writing Process vs Cheap News

Every writer has their own particular approach to the craft, and if we are all to be honest with ourselves, even the most seasoned of us would probably admit to changing up the process several times along the way.

It’s a variable thing process – some writers can easily open up a word document and start scribing without anything other than an idea. Others will have to put a lot more into the preparation side in order to even begin writing something worth reading.

I don’t refer to myself as a ‘seasoned writer’ by any stretch, but having said that, I often forget that I have been doing this semi-professionally for well over a decade now and nearly half a decade as a journalist/reporter/columnist for a large variety of online/print mainstream media.

To me, writing process is all about setting. The delivery of a good article or blog is all about nailing that setting.

As a freelancer, my home is typically my office. If it’s not my home, probably a press box somewhere.

Given that, I’ve naturally experimented with different places of writing but one thing remains key, the less distraction the better. That’s an obvious conclusion to reach, but within distraction is also noise, and the elimination isn’t so much the actual physical distraction (like your cat jumping onto the table when working at home for instance) as it is about the noise part.

For example, I can write with a little bit of background noise, low beat music for instance, but I can’t even begin to find the concentration to write even a sentence if loud direct noise is in the room, like television audio or loud conversation.

Being a journalist and having to meet deadlines teaches the need for speed when it comes to writing. But it also teaches about detail, working out just what to leave in a story and what can be taken out, understanding the particular narrative or ‘angle’ the article is taking.

Quite often, in fact for some of the best articles and blogs I’ve ever written, that formula has evolved during the actual writing of the piece where I’ve enabled myself to relax and let the story tell itself. The basic idea is there, that gets me started, but it’s that state of relax and deep concentration where there is literally nothing between my thoughts and the document that is truly representative of the best moments in writing.

As a journalist, seasoned blogger, and passionate writer, I’ve also learnt that it’s vital to understand one very real reality.

That reality is simple, the reader (that’s you reading this) will likely decide within seconds whether they’re liking what you’ve written or not. We live in an age where information, news, and the reaction is being delivered more quickly than it ever has before and in a huge variety of ways.

As a writer, your readers have hundreds of different options ready and waiting for their attention, so if you want to be truly good at this thing, you’d better learn that your craft isn’t actually about trying to reach and convince absolutely all of them.

Good writing has the ability to do is engage, inform and challenge. It’s not about re-publishing the same old rubbish message over and over again, it’s about developing a truly detailed account of your thinking and/or the facts and this can only be done with effort and skill.

Call be a bit jaded, but I believe that half the reason why a lot of mainstream media outlets get the flack they do is because their content isn’t crafted as much around quality as it is about the time factor, i.e being the first or the most informed on a story versus how that’s actually written and presented.

But, and it’s a big but, mainstream media is also a business and like a lot of businesses it looks to provide the biggest bang for its buck, often with a diminishing amount of resource.

For example, it’s cheaper to pay a fresh faced journalist fresh out of university to go out and tell the big stories with nothing more than a notepad and laptop than it is to invest the time into really digging into the facts, cultivate good reliable sources, and most importantly, have the freedom to be able to tell good stories.

Many journalists are terrified of screwing up, something that is fuelled by the constant reminder of how lucky they are to call themselves a professional in this business, that they won’t seek greater challenges within their particular beat.

That’s why so many all in media scrums that rugby journalist will be well custom to are often described as ‘theatre’ by some of the veterans in our business, because it’s often not about anything other than being sure to ask a question so there is something to write about – regardless of how bad many of those questions often are because they’re thrown out without any real thought.

Being a blogger for over a decade before entering this business is something I will cherish forever because it gave me time to understand how process truly impacts on the final piece. It’s also given me plenty of room to fail, and yes writers, you will fail numerous times along the way toward a career in writing.

The bad articles are the ones written without thought and are designed in no way other than to join the constant void of information. The good articles are written with thought, and as a writer, my advice would be to ensure that you spend as much time looking and thinking about your craft (and it’s potential impact on the reader) during and before putting pen to paper.

That, in my opinion, is a little bit of what you need to do in order to be a good writer (if one can ever be called such).

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

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

Our story begins in November, 2004.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

COVID-19 Observer: Tuesday 17th March

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

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

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

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

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

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

All of us. As one.

PERSONAL: The Importance Of Focusing On How I Contribute

The only things in life that you can control are your words, actions, and feelings, but you can also influence a lot of outcomes with your ability or inability to think critically about what you do and don’t do in certain situations. 

Sometimes a choice isn’t within your own control, ask a large majority of the population working in careers they despise if you don’t believe me. A lot of the time, we may have to act in a situation where the choice has been made for us and this can lead you to a situation of attempted influence or actioned ignorance.

That’s a very technical term to describe a simple concept. How you choose to react, deal with, and respond to a situation where the choice isn’t always just in your hands, as you’d prefer, can often reflect whether you’re prepared to rise to, or have settled to accept and ignore.

The truth is, you can do both, but the latter will leave a far more negative taste in the mouth of those around you, particularly the ones you will have to answer to.

Being Clear, Concise, And Patient 

Like you, I find myself in situations that challenge my thoughts and decisions multiple times every day. Perhaps that’s a reflection on me because I haven’t worked out the powers of command and control as yet.

But that raises the question, would I really want to live in that sort of world?

As much as challenging situations can be stressful and lead to all sorts of emotional responses, it’s important to do two things during that. One, be analytical about how you handled that situation when reflecting, and two, realize that you were probably a big part of the reason that situation occurred.

For example, last week I texted one of my support workers with a very vague message that led her to believe I wanted immediate action. If I had been more specific about what I was actually asking and saying, then she wouldn’t have thought I was demanding for a response right there and then, and thus, she wouldn’t have felt annoyed and that I had suddenly changed my plans at the last second, with the direct implication being that I required more work out of her.

That’s just one example of many lessons I’ve learnt recently involving how my own direct action, inaction, or lack of clarity can lead to confusing and annoying situations.

I’d have saved myself, and her, a lot of anxiety by simply being more clear, and perhaps a little more patient.

Focusing On How I Contribute To The Wider We

The events in Christchurch recently sparked a lot of conversation about the acceptance of different cultures and religions.

I’d like to see the same conversations happening around how we interact with one another, the things we say or not say, and how we deal with conflicting viewpoints because it’s not too dissimilar from the current unity being shown on that front. Like this example, we shouldn’t have to wait and experience such tragedy for the glass ceiling on these other important conversations to finally be blown off.

Some may say that leaning on the notion that accepting so much is beyond our control may be of defeatist thinking.

That’s where the power of conversation comes in. As an entire society and especially in the online spaces, we need to slow down, think, evaluate, and encourage ourselves to not let frustrated or bitter emotions get in the way of simply having a conversation about the issue/issues at hand. The same goes for non-issues, those positive points in our lives where we think everything is great and not in need of any further evaluation.

Everything needs evaluation, ongoing clarity,  and systematic acknowledgement that we ourselves are always half of everything. We aren’t the whole 100%, our virtues and beliefs may be right and working for us, but that doesn’t mean they are correct and to be followed by all.

It’s a simple concept, but it can often take a lifetime to understand. For me, it’s taking 27-years and counting.

Blackballed (The Story of Michael Pulman): Part #1

Are you sure you want to know what it feels like to be blackballed?

This story, my story, will deal with themes that you may have heard a lot about, and most probably, you can identify with some of the thoughts I will express. My story is not special and it’s not meant to inspire you. What I hope my story will provide is a pillar for change, because our community needs to change, or many people are going to go through what I went through, and it, in the end, it will kill them.

We talk so much, but we only do a small portion of that talk, and by no means is it our fault. The fault lies in many different compartmentalized ideals, those ideals exist at every level of community, and we all know exactly how to fix them. My story is not about the faults, nor is it a self-help guide for the next generation of voices for the disability community. This story, it’s about what happened to me, and the fault lies squarely on my shoulders from start to finish.

That fault is how much I cared, plus how much I wanted to do two things: make a difference and be popular at the same time.

Ideal One: Ignorance Isn’t Bliss, But An Opportunity

When you are in the process of discovering yourself, you often trick yourself into thinking that you’ve got it all together and figured out. The truth is, you haven’t, and you’re just as ignorant as you’ve ever been.

Sitting in media studies, fresh off getting some exciting opportunities that my peers hadn’t had the initiative to go and get for themselves, I think I’ve got the path carved ahead of me. But I haven’t. In the middle of a media conference, talking to Sonny Bill Williams about his upcoming boxing fight, I find myself completely out of my depth and I fake it through the entire process. Here stands a modern day superstar of sport, a man that I’ve watched on the TV for years, a guy that I’ve both idolized and critiqued, and he is standing directly in front of me taking my question. It’s at this moment where I think that I know what I want to do for the rest of my life.

During that press conference, I get a text message from my Dad and it reads “how’s it going superstar reporter?”.

I cruised through that first year of media studies, achieving straight A’s for all of my classes. I wasn’t proud, I was relieved, and every so gradually, my confidence and self-belief were growing. Another thing I noticed was that if you cannot control that confidence, you will quickly feel as if you are a bigger deal than you actually are as if you have a gift and were chosen for these opportunities. It gives you a sense of fulfillment and purpose, but at that time I was completely ignorant of the fact that I was lucky or in a position of privilege.

And then it happened… I get a call from CCS Disability Action. They want to share my story in their upcoming newsletter.

Ideal Two: The Opportunity To Give Back Is Alluring

When I grew up, I experienced the actual realities of what it was like to live in the disability system. The system is actually full of amazing people, almost all of whom have a resolve to help in some way.

I’d like to think that one of the reasons I said yes to being the feature story for that CCS Disability Action newsletter, and the reason I said yes to all the opportunities that followed, is because I wanted to give back. You tend to develop a close connection with the organizations that you intertwine with throughout the years, or at least that was the case for me. I both loved and respected CCS Disability Action.

The story is printed in early 2015 and is called “How Many Chiefs Are Too Many”. To me, every time I read it, this is a story that paints the picture of a disabled person achieving great things in the community. It makes me sick on reflection, because the disability, or the challenges it presented to me, actually had nothing to do with anything other than marketing the story toward a certain audience, that audience being other disabled people and families.

Myself and Sonny Bill Williams (January 2015)

Myself and Liam Messam (January 2015)

From there, it doesn’t take long until the phone starts ringing and suddenly I find myself starting a completely new career. It’s at this moment that I start to discover that ignorance isn’t bliss it’s an opportunity.

Public speaking is the best thing I’ve ever had the privilege of doing, the impact it has had on me has shaped the ideas that I have towards advocating for disabled people and it motivates me to stay true to what I’ve come to learn since. Feedback is a gift, but before that feedback happens, we often think we know the formula to succeed. Second, we live in a world where a quick Google search can usually lead us to the answers we seek.

Having the belief that we know what we are talking about is total bullshit and it is a stepping stone to failure. Feedback is the formula we should be taking notice of, not the end result of where we are trying to get to.

Immediately I felt a sense of belonging, purpose, and an immense sense of importance about what I was doing. So, what does a public speaker actually do? Well, speak to people, something that I had never been terribly comfortable doing, but something I quickly began to enjoy, at least within the confines of doing it publicly.

Speaking on stage, particularly to more than a handful of people, gave me a sense of energy like nothing had before, but it dawned on me that this was an art that I had already been practicing through various forms of online media. But there is a big difference between sharing with people in an online context versus a more personal medium such as being directly in front of the audience you are communicating with. The latter has a much greater impact on people, and for whatever reason, they find themselves present at the event you are speaking at, these people will often look at you as if you are ‘worth the salt’ of whatever it is that you share with them.  

In reality, I had no right to suddenly be sitting in front of these people speaking as if my story was something worth listening to, or something to be inspired by. But yet, this was exactly how some organizations in the disability community were positioning me. Why?

Part #2 Coming Soon

Michael Pulman is a Hamilton-based writer, content creator, and public speaker. Michael has a strong interest in disability rights in New Zealand and in 2016 was a recipient of the Youth with Disability Award. You can get in touch with Michael via email at mikepulman91@gmail.com