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.

Social Media: How Did It Become So Easy?

In the wake of the Christchurch terror attacks where a gunman live-streamed the killing of several innocent people, how has it become so easy to post such distressing content on social media?

Social media companies have a responsibility to ensure that disturbing content of a highly graphic nature doesn’t get distributed as freely as it has until this point. No user should be exposed to material that shows people losing their lives, no user should be exposed to material that encourages such acts.

There were examples of why this is the case prior to the terror attack in Christchurch this past Friday, and each of them ignored.

Will Facebook (amongst others) ignore again this time? One can only hope not.

Most of us are still catching up on understanding just how accessible social media platforms like Facebook, Twitter, and YouTube are. Virtually anyone can upload content and it isn’t until it’s too late that the highly disturbing, graphic content like we saw in Chirstruch, gets taken down, well after it’s been seen by thousands of eyes.

The impact that is being had on people seeing that content in the interim can have serious mental and emotional effects. You’d have to be pretty strong, I would imagine, to not be affected by the sort of content uploaded by Friday’s gunman if it happened to cross into your newsfeed.

You’ve also got to question some of the ethics behind social media companies who often rely on bots to first intercept this sort of content prior to it being sent on to an actual human being. Is the high amount of content to be reviewed no longer an excuse? Maybe not, because if anything that’s rising, but something, clearly, has got to be addressed.

Social Media: How Did It Become So Easy?

It’s hard to predict how social media companies will react to this latest example of the platforms being used in the absolute worst way.

What exactly can be done if the likes of Mark Zuckerberg are to stay true to their original vision for the platform?

It was a different world, arguably a different society, that people lived in prior to the skyrocketing success of social media. These platforms are not used just to connect, but to share and inform, advertise and distribute, break news and kick start careers, plus bring people closer to the idols they admire.

How exactly do you change all that without serious regulation that takes away some of the abilities which had, for a time, made these platforms so desirable?

My guess is, none of that was considered to the level it needed to be prior. It isn’t beyond the realms of argument that much of social media was made accessible to the population in good faith. That good faith may well have decreased somewhat, but whether or not that’s how the bosses behind these companies feel is the bigger question.

When does enough become enough on social media?

Addressing Bad Attitudes In The Disability Workforce (From A Client’s Perspective)

With pay rates set to rise again for some in the disability workforce, attitudes toward the best ways of working need to rise as well. 

This isn’t going to be a blog that has all the answers, nor is it going to have excuses for what’s not working currently. Some of this will apply to support workers, other parts will be easy to talk about in theory. But if nothing else, this blog aims to talk about attitude and where it sits in a disability sector/community that is changing rapidly.

As a client receiving disability support services, some of these thoughts represent over 27-years worth of experience.

The outlook on whether or not attitude is improving through the workforce will vary depending on who you talk to and what their respective interests are. If you talk to many disabled people you’ll find that despite the pay equity settlement, something support workers deserve to a large extent, the quality of the workforce and services on offer aren’t exactly rising at the same rate.

If you talk to some support workers they will feel like their concerns aren’t being heard and that the needs of the clients they serve are given more attention. If you are a paid professional, a very big part of me would say that this is exactly as it should be. You chose to work in this sector, the people needing support didn’t choose to live in it. Some will attempt to place blame back on their own providers, or even more interestingly, some will say that the workforce is becoming too unfair because disabled people and families now hold more of the cards than ever before.

What I’ve noticed is that it’s often the smaller organizations that seem to grasp how to implement the principles behind choice and control in their service delivery and staff conversation. Despite that, these smaller organizations are often even more compromised than their larger, national-based organizations are from a financial and expertise perspective.

Those last two words being key… expertise and perspective. Not financial.

Addressing Bad Attitudes In The Disability Workforce (From A Client’s Perspective)

The success or failure of what new systems are trying to accomplish sit on the workforce to a large degree. Everyone needs to work together to make it better, but the onus needs to be on those getting paid an ever-increasing pay packet to sharpen up on what their actual role is.

I’ve long been a believer that a certain level of a certificate (and subsequent pay standard) that a support worker sits on doesn’t automatically confirm whether they are indeed a good worker or not. Being a good support worker and the requirements of achieving such are both subjective topics, but many would tell you that the best signals of it can be found in attitude.

The discussion of attitude goes far beyond just support workers, it’s sector-wide. The very fundamentals of what system transformation is built on is a shift in attitude. That takes a willingness to learn, to change, and to work together. These aren’t just three big buzz words that look good in policy or service design, they are requirements that if not met will mean that new systems such as Enabling Good Lives will ultimately fail.

The devil is in the detail (and old phrase I know) and many of the shifts in attitude we are talking about take place in the nitty-gritty, day-to-day, moment-to-moment interactions between the system and disabled people/families.

The financials mean little to disabled people and families, apart from them receiving funding packages that met their needs.

It is my view that disabled people and families should be aware of what their packages are, how much money is available, and absolutely, all the ways it can be spent whether directly or through a host.

The day-to-day stuff is what matters to disabled people and families, including the nature in which the support is carried out in those moments. It shouldn’t be their concern, worry, or even responsibility to be direct managers of that. If disabled people and families are capable and willing to take on this direct employer, manager, self-funder role then go ahead and do it but at the same time realize how vulnerable a position you could be putting yourself in.

For as much as the disability sector has talked about supporting disabled people through the process of being their own self-managers, it’s also done very little to address what happens when that goes wrong. I know that from first-hand experiences, bad first-hand experiences.

There needs to be some serious attention placed on attitude improvement through action. Leaving people in vulnerable managerial positions is an attitude of neglect. For support workers who have to work together to serve the needs of clients, not being a team player and having a ‘bare minimum’ attitude will lead to you having more and more performance review meetings, and ultimately your employment could be at stake, whether you resign or are terminated.

Think of it from a business perspective. If partners of the business weren’t pulling their weight or delivering on targets set, that partnership wouldn’t last long. The exact same principle should be applied in the disability sector because it is a business for many involved and the very best outcomes should be expected.

If these outcomes are not met, questions need to be asked as to why. A better attitude in the workforce is required, and less responsibility being put on disabled people to help deliver that.

I’m Disabled, My Possibilities Are Limitless

Just because a term may have an official definition, that doesn’t make it true or worthy to be fighting against.

As a disabled person myself and a passionate activist for the rights of disabled people, I’ve never identified with how the use of words like ableism is currently being applied. I agree that discrimination exists and that disabled people face a variety of social, economic, and educational barriers that continue to prevent us from having the equal platform that we’ve been fighting for.

However, that isn’t a concession that ableism is ok and should continue to be used in the manner that it is.

After 27-years of facing inequality in all the areas mentioned above, I am not convinced that the so-called ‘ableism’ as its labeled is a simple matter of blatant discrimination. Furthermore, I am growing uncomfortable with how we label non-disabled people when we ourselves are the first to be outraged when labels are placed on us.

Are we suddenly stooping to the same level as those who’ve labeled as? And if so, why?

Maybe I am playing devil’s advocate here, but further to my earlier point, I also remain unconvinced that the disability community should be using words like ableism, ableists, abled allies, and more in the manner that it is. Especially recently, I’ve noticed a big increase in the use of these words, especially how we are accusing non-disabled people of being ableists and placing the blame squarely on them for all the frustration we feel due to the treatment we often receive.

Take the recent #ThingsDisabledPeopleKnow social media movement for example. The number of times you would have read the word ableism in some 20,000+ tweets would stagger you, and I immediately argued that simply because a word has an official definition (aka ableism), doesn’t make it true.

It’s all about interpretation, and speaking of interpretation, some of the things I’ve read in recent weeks suggest to me that many disability rights activists are prepared to now start a war against non-disabled people and the institutions they serve.

Furthermore, our community can often get extremely angry toward the so-called “abled allies”, take the recent Crutches and Spice blog as a good example where Imani Barbarin wrote that “Bryan Cranston is everything I will not be accepting from abled allies in 2019”.

The question then becomes – is all this a result of years and years of frustration coming to a head and finally making some legitimate headway?

The numbers of disabled people worldwide facing discrimination cannot be ignored and this is not some made up myth. Speaking of myths, disabled people are educated and can bring a lot of benefit to the workforce. One of the biggest reasons this myth exists amongst some non-disabled is down to how invisible disabled children are in the schooling system. If New Zealand is anything to go by, many disabled learners are often grouped together in special education units separated from the mainstream classroom.

I’ve personally argued for years that one of the best things we can do to better serve lifetime inclusion of disabled people is by starting from the earliest moments of entering the education system and having disabled kids visible to their non-disabled peers in a way that doesn’t suggest some kind of poignant difference.

Disabled people are not special just because of their disability, and we are (in my mind at least) entitled to nothing more than an equal footing in all the areas I mentioned at the start of this blog.

But it’s how we go about achieving this equality, and we should always ask ourselves how productive the things we say within our own community are when it comes to reaching the eyes and ears of those outside of it. Personally, if I wasn’t disabled and I heard someone labeling me an ableist because of my ignorance, I’d do little to change my behavior because I’ve just been labeled something that I’d likely not understand in the first place.

Ableism Doesn’t Restrict My Life

Call me an apologist for the non-disabled, throw all the stats, state all the personal examples of your own personal experiences to back up why using these labels in discourse is appropriate because I remain unchanged on one simple argument.

That argument, dear reader, is a two-fold one. First, as disabled people advocating for the equality we crave, we must accept that a big key to success sits outside of our own community and will likely not be controlled by us, we don’t hold the cards and we shouldn’t own all the conversation, either. The cards sit in the hands of a productive, co-design approach to all levels of policy, leadership, and data that impacts and influences social, economic, educational, and really, all drivers of modern society.

Second, and I say this as a disabled person… one of the biggest keys to advocating and thinking critically about the best ways to achieving equality for disabled people is having the ability to place ourselves in the mindset of non-disabled people and think about things from their point of view.

Yes, we are frustrated and yes, we have every right to be. It’s beyond comprehension that in 2019 we are faced with some of the barriers that we are.

But let’s be productive about this. Creating a community, sharing information, and linking with people of similar mindsets is great. But what about where all of that goes? Where does the current level of discourse go in the long run?

Keep in mind, this is just one man from New Zealand’s point of view, but I choose to challenge myself first. As a disabled person, my possibilities are limitless. Literally none, and I mean none, of the success, failure, and missed opportunity I’ve experienced in 27-years has been down to my disability or the attitudes of those in front of me who don’t experience what I do each day.

I’ve just made a conscious effort to keep it real, trust in my own abilities and acknowledge my weaknesses, and not be forced into thinking a certain way about disability. As I said, my possibilities are limitless. It’s all on me, I am owed nothing and I work to make my platforms in life as equal as possible. That’s literally all I can do.

So, what do I think about terms like ableism? Simple. You get more bees with honey than you do with vinegar.

Five Challenges for the Disability Sector in 2019

2019 is a crucial year for the disability sector and its challenges are familiar, from funding to information, to new prototypes and putting the work into all the talk. Here are my five challenges for the disability sector in 2019.

Funding: Providing real “choice and control” support options and room for changing need

Late in 2018, a report published by NZDSN and Deloitte claimed that the disability sector is currently underfunded to the tune of $150million, citing a 12% gap between Government funding and the actual costs for supporting disabled people in New Zealand.

Providers argue that the underfunding across the sector has been a long-held problem and that without increases, their ability to provide more flexible support options will remain compromised. $49.04million is currently allocated to the MidCentral prototype, a much talked about trial that aims to provide more flexible support options and choice to disabled people and their families.

For disabled people and families, it is important that their funding packages are allocated to have significant, not minor, room for changing and increasing care needs. What this really means is having the ability to increase funding if required, and to do it quickly. The belief in many circles is that investing earlier can lead to lower costs for supporting disabled people, particularly if alternative futures other than Residential Care/Group Homes are found. But what for those with changing and increasing needs?

The new system being trialed in the MidCentral, and previously in the Waikato, shows that supports can be flexible in terms of how they are delivered. This is especially true in the cases of being slightly more cost-effective, removing the “man in the middle” in a lot of cases to keep down HR and other managerial costs, but the actual support budgets themselves are often fixed and difficult to increase by large amounts if needs suddenly increase due to prolonged sickness or advanced deterioration of existing conditions.

If NZDSN and Deloitte’s report is to be believed, one could argue that the $150million funding gap in the sector goes well beyond just services. The more discussion, investigation of, and critical evaluation across all levels of funding, as well as comparison with other sectors, will be vital in 2019.

Information: Relaying information to, for, and about the sector in a modern way

How information is relayed to disabled people and families needs a serious shakeup in 2019.

We live in the digital age, and it’s time that news, views, and discussions pertaining to disability are presented in a modern way. Written text via monthly newsletters is no longer the only way information should be shared with the community. Video in the form of YouTube and live-streaming platforms like Twitch and Mixer, pictures via Instagram and Facebook, and audio through podcasts on services such as iTunes are just a few of these more modern ways of communicating. Many organizations and a handful of influencers are well established on some of these platforms, but the majority remain underutilized, and it’s disappointing because this can and should be leading to many job opportunities across the sector, jobs that disabled people are well capable of doing.

Beyond that though, we need to get away from this subconscious fear that information needs to be censored. Information needs to be carefully and strategically released to the community, but it also needs to talk to the people in the community, not just at them. The sector likes to focus on the good stories, but many of the elements for change can actually be found in the bad stories. This information also needs to be accessible for all, i.e available in easy read and accessible to the deaf via captions in videos, but it doesn’t need to be as rigorously controlled as it is. There is often paranoia about misinformation spreading through the community due to the impact that this could have on the so-called “safety” of disabled people, and/or some of the tired concerns around privacy. Information and opinion-sharing throughout the disability sector is important, but it needs to be free flowing, carefully and clearly articulated, but most of all, much, much more immediate.

For all disabled people and everyone else working towards a better tomorrow for this sector, we need to know what’s going on, where it’s going on, and why it’s happening. How else can we critically evaluate and strategise for the future? We could also rely on what the Ministry, their subsequent officials, and a handful of local leaders and influencers tell us, but what about the views of those outside those circles?

MidCentral: Ensuring transparency and effective change for disabled people

“One of the things that has become very apparent to me and is very clear in my mind is that we’ve got, I would say, decades of not just unmet need in the community but unrecognized need”.

Those were the words of Lorna Sullivan, head of the Connector/Tuhono team in the MidCentral.

Currently, numbers in the MidCentral indicate that 500 disabled people and families have already come on-board the prototype since it’s launch in October 2018. This is, already, a similar amount of people that the Waikato demonstration of Enabling Good Lives has supported, but over the period of three years, not two months. It is clear that the numbers of people coming onto the prototype in the MidCentral are higher than allocated, and on current trajectory, expected to rise again.

Sullivan also urged providers to move away from notions that responses to disabled people’s needs can be standardized.

“We have to shift away from this idea that we are a service”, Sullivan said.

What has become absolutely transparent since the launch of Mana Whaikaha is that providers, for the most part, have been woefully underprepared for the change that the prototype is trying to give to disabled people. This was something that was predicted and has come to fruition, funding gaps or not.

The challenge now, for Sullivan and her team, appears to have become not only about ensuring that they can work alongside disabled people to create better outcomes, but it’s also becoming about taking providers by the hand and directing them on the type of changes needed to their own systems. Furthermore, connectors in the MidCentral haven’t had the ongoing training and development due to the increasing numbers coming onto the prototype, and Sullivan says that this needs to be addressed early in 2019.

Leadership: Lack of strategic, on the ground, by the people leadership

The state of leadership across the disability sector is seriously lacking, and in 2019, this presents perhaps our biggest challenge, both in terms of finding fresh leadership and investing in it.

Also, using social media to demand change from Government and other mainstream agencies for things like access whilst using the term ‘ableism’ is inherently not leadership, and shouldn’t be recognized as such. The increasing discourse and labeling of non-disabled people as ‘ableists’ needs to stop, fast. This point is as equally applicable to this particular challenge of leadership as it is to the previous information talking point.

The biggest problem here is investment, both from a financial perspective and a hands-on perspective. There have been many strongly-willed, capable, and determined leaders that were initially projected to be the big change makers in the disability sector. Some of them have, and continue to do amazing things both in New Zealand and internationally, but it would be fair to say that without some form of financial incentives moving forward, i.e jobs for disabled people where the development and enhancing of their already strong leadership skills takes place, these potential leaders will be forced to look elsewhere and go down alternate avenues where their talents won’t be fully realized in order to find an opportunity that financially rewards them.

This has already proven to be a big loss for the disability sector, and if it continues, it will hamper the efforts of what new support models are trying to accomplish in theory, because as it stands right now, terms like “social investment” and “capability” are areas of the sector that are big on words, but little on action. People need and deserve to be paid for their time, another reason why further investment across all areas of the sector is needed, and potential investment that could see big returns.

Less Hui, More Doi: For the benefit of the people

One of the things Lorna Sullivan raised recently was the deep sense of isolation disabled people and families are feeling from their own community. This is also something that is a familiar conversation point around the leadership tables, and yet we still have this problem.

This isolation is as much a social issue as it is a service issue.

For one, many families don’t know who to turn to for information, for the support that is both hands-on and effective, as well a general understanding of how to navigate the system. People are still going to have to navigate through the disability system in one way or the other to access supports. Connectors are only one part of the puzzle, and even that requires a small amount of navigation and awareness to access in the first place. There needs to be more support and resourcing, not only for the navigation aspect, but also understanding the practical “how to’s” when it comes to managing support budgets, hiring and firing support workers, and employment law.

Simply having such teaching resources available on websites isn’t enough. Because often people won’t search for help until they actually need said help, and this is often at a time when additional, hands-on, responsive, and effective support is most required. My guess, however, would be that many people don’t care about these things. They just want the flexible support options that work for them, owned by them, and directed by them. But let’s be real for a moment, in order to achieve something like that, you have to have a certain amount of knowledge and resource behind you.

Practicing what we preach isn’t just about changing how support is delivered, it’s about ensuring that this support actually addresses not only the current need, but perhaps the underlying needs as well, and a large amount of this requirement is in understanding. To do that, you’ve really got to look at the individual and their unique context, and that’s where you design a support structure that truly works for them. That takes a lot of time, experiment, and often a lot of going back to the drawing board at each individual level, so it’s vital that more investment of time and understanding is implemented across the sector.

It isn’t about investing heavily early, it’s about finding the sweet spot for each individual. For that individual, their lives aren’t a box on a checklist to be ticked off, their lives are uniquely theirs, and they are relying on this sector to listen to, include, and advocate for them.

An audio version of this blog can be found here: 

https://soundcloud.com/realmichaelpulman/5-challenges-for-the-disability-sector-in-2019

All resources used in the creation of this blog can be found here:

https://www.nzdsn.org.nz/wp-content/uploads/2018/12/NZDSN-Newsletter-December-2018.pdf

https://www.nzdsn.org.nz/wp-content/uploads/2018/12/FINAL_Developing-a-Workforce-to-Support-Disabled-People-and-their-Whanau.pdf

Lorna Sullivan – Thinking and Acting Differently for System Transformation

http://www.enablinggoodlives.co.nz/system-transformation/transformation-papers/system-transformation-updates/september-cabinet-papers/

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

Examining DPO Engagement With The Disability Community

Are Disabled People’s Organisations doing enough to ensure that the voices of New Zealand’s diverse community of disabled people are being heard and represented?

Disabled People’s Organisations, or DPO’s as they are more commonly known, are representative organisations governed by disabled people. In New Zealand, the size of the eight recognised DPO’s vary, but primarily their existence and mandates are based on representing the voice and views of their members. For example, the Disabled Person’s Assembly NZ aims to engage the disability community, with a view to listen and articulate the views of the community when working alongside decision makers.

But in reality, are disabled people satisfied that the organisations representing them are really listening to and hearing their views?

To try and understand this question a little more,  I created a poll on Facebook asking members of the disability community if they felt that DPO’s were generally doing enough to ensure that their voices were being heard and represented.

Out of a total of 34 votes submitted, 26 people said that they felt DPO’s could do more to hear and represent the views of the disability community. Just 2 votes came in saying yes, they were satisfied, whilst a further 6 people argued that with more funding, DPO’s could do more for disabled people.

Granted, we are dealing with a very small number of people who voted in that poll, and there is every chance that the numbers could swing dramatically in the opposite direction if more people had their say. Many DPO’s also generate regular surveys asking their members for feedback, and that feedback may tell more of a whole story. 

The Lack Of Funding For A DPO

The problem for many DPO’s is the amount of funding available not being sufficient enough to achieve all the goals it has. This is an argument put forward by many, and whilst it is familiar, it does have a lot of merit. Lobbying Government, be that local or national, for example, can be a time-intensive process and many organisations don’t have the time to put as much effort into pushing decision makers to further consider the rights of disabled people when it comes to new or existing policy. 

Holding local community forums and advertising them costs money as well, but some DPO’s are lucky enough to have forged connections with other community organisations in the disability space and have regular opportunities to hold their events using their buildings free of charge. Further costs for DPO’s can include travel and accommodation expenses for executive committee members when on official business on behalf of that DPO, and further expenses that cannot be forgotten is the costs to rent out spaces in buildings and pay all the staff working at national and regional levels.

Revenue streams for DPO’s vary, but memberships and donations often play a big part in balancing the books year to year.

Making Changes, Taking Responsibility For Delivering A Quality DPO

It is absolutely vital that the voices of disabled people and families, as well as the organisations working alongside them, are heard at the local level. But this, in all reality, is a two-way street. Many people with experience working within DPO’s argue that the community itself doesn’t engage enough with their elected leaders by attending local forums and national events, spreading the word about a DPO, or generally caring about what’s going on.

As a result of this, once regular forums see a lack of continued support from the community, slowly becoming stale, leading to disillusion on both sides.

That’s where two things become ultra important moving forward. Firstly, how local leaders engage with communities. These leaders need to ensure that regular meetings are held and that people know about them, and in some cases across New Zealand, this is not happening.

In the case of the DPA in the Waikato, Meetings are canceled suddenly, often without much notice or reasoning behind such other than the appropriate people needing to be somewhere else.

Advertising and information sharing on numerous modern platforms is essential also, and this is a national problem, not just for DPO’s, but for most organisations within the greater disability sector. Rather than relying on the traditional methods of monthly newsletters, word of mouth, and occasional Facebook page updates to engage with members, DPO’s need to find more ways to use new platforms such as Instagram for example, or embrace the live streaming video opportunities presented by YouTube, Facebook, and Twitch.  

Imagine a weekly live stream with an NZSL interpreter that is also presented as a podcast. This would allow a DPO to simultaneously share the latest news that would concern their membership, as well as have in depth and engaging conversations about issues that their members raise. Or, if you wanted to stick with holding local and national forums in the way that they are currently presented, at least record and advertise what happened at said forum in a way that is accessible to all disabled New Zealanders, and the wider public.

Secondly, there is a responsibility on the memberships of DPO’s as well. During conversations ahead of writing this blog, some did raise with me their frustration and disillusion with the lack of engagement by local communities when it comes to attendance at events that don’t include a Ministerial visit or big announcement of some kind.

Often, one person said, it was “the same old faces and the same old discussions at the same old events with tea and biscuits”.

Conclusion

The aim of this blog wasn’t to rubbish DPO’s, nor was it to make excuses for their occasional lack of transparency. The aim of this blog was to have a fair and frank discussion about a question that needs more attention placed on it.

We started out the blog by asking that question, are DPO’s doing enough to ensure that the voices of New Zealand’s diverse community of disabled people are being heard and represented?

Regardless of the answer to this question, the discussion should be about the roles, accountability, responsibilities, and most importantly, the outcomes that DPO’s are delivering for disabled New Zealanders at all levels. It doesn’t take a whole lot of funding to listen to people, nor does it take a whole lot of funding to discuss that invaluable feedback in the boardroom. 

Resources Used In This Blog:

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 

The Whole Of Life Approach To Supporting Disabled People

If System Transformation is to truly aid disabled people toward achieving a better life; the care aspect of support cannot be the overarching factor of the individual support package.

Make no mistake about it, degrees of need vary and different support packages will provide different things for different people in the new system. This variety will be one of the key learnings during what is promised to be a “try, learn, and adjust” approach, but before rollout, and well after, disabled people should be encouraged to approach their new support packages in different ways.

One of those ways could be to look at care requirements and how they are delivered as one of the most basic aspects of the entire setup. Yes, I just simplified it and used the word basic, in a system where even now, getting support provided is anything but.

If we are truly talking about using an approach to support that builds on people’s aspirations and gives them the autonomy to do what they want to do, then surely the delivery of care support (whatever that looks like) sits at the bottom and is one of the basic features toward achieving everything else.

For example, let’s look at someone with a physical disability who may come under “very high needs”. Let’s call this person Johnny.

If Johnny wants to study part-time three days a week in the morning, work two days a week in the afternoon, and hang out with friends and family on the weekends, then having his care needs (shower, dressing, home help etc) has to be in place in the first instance, right? None of the other things will work if the core care aspect is in place first, because Johnny needs to be able to get out of bed at 5.30am – 6.00am in order to make it to his class at 8.00am, Johnny needs transport to get to and from work, and he may choose to have a support person with him during all three of the things mentioned above, even when hanging out with friends and family because he may have additional needs when it comes to feeding etc. 

Point being, whatever Johnny needs in order to feel most at ease, he may choose to use a support worker rather than natural supports for some aspects of his needs, so then the support package needs to cater for that.

My idea of this approach is certainly nothing radically revolutionary compared to what has been discussed prior to now. The phrase “whole of life approach” has been used many times in the past when discussing new models of disability support. Enabling Good Lives used it, Individualised Funding providers used it, and most notably, Dr. Mark Bagshaw used it in his brilliant paper discussing support reforms back in 2008.

What’s more, this term has been one of the underlying values behind many of the roundtable discussions amongst sector leaders and advocates in the buildup to DSS System Transformation (due to launch in October) in the MidCentral.

DSS Transformation Focuses More On Disempowerment Of Disabled People

For too long, disabled people and whanau have been disempowered by two factors, community, and system.

Community (both the mainstream and the disability community) expectations, ideologies, and power struggles act as barriers just like the physical access issues in the built environment do. The system equally places barriers in front of disabled people because they can’t get adequate levels of support to be able to do the things they want to do, including in education during their most critical development years.

But there is no use in barking on about the mistakes of the past, or is there?

Dr. Bagshaw wrote that one of the biggest mistakes that have plagued disabled people has not been from a lack of investment or effort, but more so, how that investment and effort has been applied. What Dr. Bagshaw also eluded to in his paper was that a “Whole Of Life” business model that addresses infrastructure barriers, community expectations, and disempowerment was required.

Back in New Zealand and during a time when DSS is about to undergo its biggest transformation in history, the primary focus appears to have been addressing the disempowerment that disabled people face. Perhaps there is room for more work on infrastructure (including Universal Design) in the future, but given that the DSS project is under the scope of the Ministry of Health, the depth of reach is somewhat limited.

The Whole Of Life Approach To Supporting Disabled People

My idea of the “Whole Of Life” approach would see various recourses, including Maslow’s Hierarchy of Needs, fully realized under the new system of disability support. Like anyone else, disabled people’s morality and fulfillment matters, and that needs to be one of the core approaches to support, with less focus on the size of the financial investment.

System Transformation will rollout in the MidCentral region of New Zealand from October 1st.

#MeToo Movement Needs To Be Followed Up By Real Talk From Men

Sexual abuse, against any gender and in any form, is never acceptable. Cynics who say that the #MeToo hashtag is an inappropriate form of raising awareness to the issue are missing the point entirely.

I’d dare say that the real reason why so many women spoke out so strongly on social media about their own abuse stories is because the issue is not going away. If anything, it’s getting worse.

Society has become more and more sexualised, and young people are expected to “put out” to be a part of the social norm, regardless of the values being taught to them by their families. If young women, and men, don’t engage in the highly sexualised culture that is modern life, they are judged by their peers, and sometimes, the peers closest to them.

But here’s the other thing – those same peers judge the person when they speak out about the sexual abuse that occurs because of those high-pressure situations. Nobody talks about that, all the discussion surrounds the act of sexual abuse itself, and to hell with the circumstances which led to it.

Said circumstances cannot be defended. What the #MeToo movement revealed wasn’t anything our society didn’t know already, but it put the focus squarely (and perhaps unfairly) on men and their responsibilities surrounding this subject moving forward. Whilst stats show that both genders encounter sexual abuse, nobody can deny that women are in the higher category of victims.

Men Need To Look Closely At The #MeToo Movement

It’s time that more men starting having conversations about just why the horrendous rates of sexual abuse towards females are occurring.

There are multiple aspects to this argument. Perhaps the fear of judgement, being disowned by their friends and family, or even having to sit down and look into why these situations even happened in the first place. None of those reasons excuse anybody who sexually abuses another person, but it is relevant in terms of their mindset after the fact.

But then, you also have those who are just downright terrible people, with no morals and no regret for what they’ve done, and perhaps continue to do. That’s why we have a prison system here in New Zealand, because that’s exactly where those predators belong.

Good on the thousands of women who spoke out using #MeToo over the last few days. Now it’s time for men to have a deeper discussion about the issue and not be excused for refusing to do so.

GTA Online: Changing The Game For Rockstar

Some would argue that aspects to GTA Online have become a little over the top; but it’s success cannot be questioned. Not even in 2017, four whole years after launch. 

GTA Online is as playable and content packed as its ever been. Gamers still keep coming back for more. Similar to FPS shooter Destiny, GTA Online has amassed a cult following of loyal fans who spend hours upon hours of game time playing through all the modes, both new and old.

Some of the new online modes GTA Online will have to offer are Transformation Racing, which for the first time will allow players to switch between air, water, and road during the course of a single race.

The foundation of GTA Online’ success has come from periodic releases of new game modes.

GTA Online: Changing The Game For Rockstar

The concept of GTA Online was favourable to gamers and was met with a ton of positivity following its original announcement. When GTA V launched in September 2013 (can you believe it’s been that long!?), gamers had two weeks to get familiar with the game prior to the online component releasing.

In 2013, and perhaps even before then, Rockstar had seen the writing on the wall. Online was the future for gaming; developers could no longer just rely on a jam-packed campaign mode. Gamers finish the core single player component of a game quicker than ever, and with that, they want more ‘bang for their buck’.

GTA Online not only gave gamers just that, it changed the course for future Rockstar games.