The Black Dog Returns

There are many different ways to describe a man’s mental health. A few years ago, when I first started noticing that I had symptoms of depression a friend asked me if the “black dog” had been chasing me.

For whatever reason, I’ve always liked that particular description because it represents two things I actually love. Black is one of my favorite colours (as it should be for any die hard All Blacks fan!) and dogs are in my top three of favorite animals.

Truth be told, I love the black dog. When he bites, it hurts, but what he represents is also core to my very being.

Let me expand on that a little.

I believe that we are put on this earth to overcome challenges. Many might look at me and think that the wheelchair they see me sitting in is that very challenge, but truth be told, it isn’t really.

The consequence of the life that was chosen for me is that I will never be able to go at it alone, in fact I can’t even make that attempt because I would need medical assistance within hours!

My success will never be just mine; my failures have a far wider reaching impact than just me, and the choices I make each day will typically rely on a third party to execute in some shape or form. From the moment I wake up until the last moments before I fall asleep, I will always need someone or something else to be my literal arms, legs, and breath.

That’s not why the black dog bites. These are actually realities I had to accept well over a decade ago now. If I hadn’t accepted them, I wouldn’t be able to function, nor write this blog.

2021 Has Been A Great Year

There are always challenges, but by and large, 2021 has been a great year so far. I feel like I’ve really taken my journalism to another level, and for one of the first times ever, I almost exclusively write for professional news outlets who actually pay me!

It has taken a long and hard slog to get to this point, I’m talking the better part of six years of doing it for free. These days, there wouldn’t be too many times when I would say yes to a story without the financial compensation that comes with it.

My writing has also focused largely on rugby, which has been my day job for nearly 18-months at this point, and I’m very much enjoying the challenges of meeting deadlines and learning the craft of finding new and fresh “angles” in my stories.

The truth is I really respect and admire the majority of the rugby men, be that coaches or players, that I get paid to write about. There is a definite level of responsibility that comes with the territory because we live in the age of click-bait and ever-growing tension between the players and the press, so it can be a taxing job at times to try and walk that fine line between me (the journalist/columnist) doing my job and treating those people with respect.

Respect, as I said in a tweet directed at one particular player recently, always has to be a mutual thing. All I can ever do as a journalist and as a man is to conduct myself in the best way possible.

Life, as we all know, should be a balance between work and play. Between the months of January and May (when my beloved Chiefs sadly couldn’t get the silverware) I pushed myself to be as “in the know” about the team I cover as possible. I wanted to be able to give as much information to the public, through my writing, as I possibly could.

I also didn’t shy aware from suggesting that the current Chiefs coach was far better value than the former, and believe me, it would have been easy to hide away from a media session or two after making that suggestion!

This business requires a lot of showing up, a lot of hand shaking, and a lot of building good relationships. My style of writing and interviewing has always had a deepness to it, and that’s been by design. I’m not there for soundbites; I actually want to know and understand what the hell is going on!

This is something that is far easier for me in the late summer/early springtime of year versus what it is in winter, due to my disability. After the Super Rugby Aotearoa campaign ended, I took a bit of a break while still keeping up with weekly columns et cetera.

Why Is The Black Dog Back?

For me, two reasons why I feel the black dog has made a return. Firstly, balance is a big thing and if you get that bit wrong you become a little bit too self-aware. I was too aware of the wrong things, and not aware enough of what that was doing to my mental health.

Those wrong things won’t be a surprise. Social media, for all its advantages, can be a toxic tool to check first thing in the morning. You’re presented with what the competition is doing, what those who don’t know a thing about you think of your work, and just another news story that sets off a chase to find the “angle” and write about it.

I wasn’t that I was doing too much of this, I just wasn’t letting myself warm into the day first.

In other words, a lack of routine. That is something that is going to have to change, and change fast, if I am to pull myself out of the rut. You can’t simply wake up, scroll social media, talk to editors, go to interviews, and then write for the rest of the day.

I did a little bit of that at times this year, and then when I wasn’t, that’s when I started to sleep in until the middle of the morning and would spend the rest of the day trying to make up time.

My partner deserves better than that. I deserve better that that.

A Promise From Me To You

Here is a promise to you, the reader, and to those around me who have been patient and respectful enough to let me work it out for myself.

I’ve embraced the black dog, time and time again. I’m not about to let it beat me down this time. I owe it to myself, my partner, our cats, my support workers, my family, and my professional colleagues, to wake up tomorrow and keep going.

I’m incredibly lucky to be able to write to earn a little bit of a living at this point. I can take that in whichever direction I want to, but I know if I don’t make some changes, I’ll burn out within the next five years with nothing close to the potential that I know I have to show.

I still want to be doing this, not just in five years’ time, but in fifteen or twenty. I will do what’s necessary to put myself in the best position to achieve that.

That’s my promise to you, but I wonder if you could make one to me?

Please, just be kind. If you feel the need to, reach out and talk to somebody, put your arm around them and tell them it is going to be ok. My partner does this for me, and trust me, it helps. Be a friend to people, not just a colleague or a work partner.

Be a good man. The best man that you can be.

It’s Time To Question Our Disability Leaders (Not Just Government And Providers)

The wider disability community has every right to question the effectiveness of its leaders and the advice they give to officials as a $100m and counting overspend on Disability Support Services continues.

Don’t just blame the government or say that disability support providers are simply trying to protect their own interests. This problem is far greater than that, and crying about it won’t help. Accountability needs to occur and hard questions should rightly be asked.

This should serve as a strong reminder to sector leaders that they simply didn’t get the actual resources required to deliver on the promises that they, and the Government, were making to the community. 

The disability sector now needs to find a way to get harder and demand that such an oversight never happens again.

The fallout from the report over the weekend has been intense as disabled people and sector leaders react to what’s become a major issue with serious ramifications for the Disability Support Services landscape moving forward.

If cuts to services were to be made on the scale that was being planned, it would make a mockery of what has been a substantial amount of work done over the course of many years to ‘Enable Better Lives for disabled people and families.

Plans by Government officials made for chilling reading that would make even the most positive of disability advocates cringe.

Cutting, wherever and whenever possible, the in-home personal care and community participation supports, on a mass scale was just one of the desired directions that officials were going to take in order to decrease spending by $10million this year and a further $20million in the years after.

The time for the disability community to ask some hard questions of its own leaders is now, and I’ll tell you why.

An Oversight On The Actual Realities Of Disability Support

This has been a substantial oversight on the part of those leaders, the officials in Wellington, and many of those involved in table discussions that have chewed up so much time and investment that many people rightly felt only scratched the surface of what was actually happening in the disability sector.

The resulting actions played a key part in a near $100million overspend on services.

Those actions didn’t have enough accountability for the appropriate parties, they lacked the evidence to suggest a long-term solution other than stating demand-driven support models are the ‘right thing to do’, and all decisions were primarily made on a faith-based approach when in reality there was no reason for decision-makers to have any trust that officials wouldn’t attempt to cut back on supports.

It’s all very well and good to point the finger of blame factors like provider HR costs, the pay equity deal, rising residential service costs, increasing high and complex needs, or more people accessing services. All of these factors are real and have valid concerns, but they aren’t new problems.

This is why I label it an oversight and the reason why many should now be questioning the advice that has been given to Ministries.

These factors didn’t appear to be addressed in the funding models that were accepted by those responsible for ensuring that disability support is delivered in a way that lives up to the principles driving system change.  

Principles and flashy policy documents are just words on a page if the product or service doesn’t deliver in the way promised.

If the disability sector was as united as some say it is, then why was Enabling Good Lives/Mana Whaikaha left out of discussions surrounding the radical plans to cut $10million in support for the next year alone?

Surely people being affected by changes to NASC were going to be asking ‘what next’ and looking at how they could utilise what was only ever referred to as a ‘PILOT’ by top-ranking officials.

That ‘PILOT’, as well as the Waikato EGL demonstration, were both in holding periods until further decisions were made about rolling out a new system nationally.

That rollout was never certain and yet all the discussion suggested that a model such as this was going to be the way of the future, again, acting in good faith that the appropriate levels of funding would be provided once the level of evidence supporting such a system was provided.

Funding requirements in sustaining the new disability support options (EGL/Mana Whaikaha) for disabled people as well as keeping the status quo are not, and were not being met. This is no longer a point of opinion but unquestionable fact.

It’s also a fact that advocates and some organisations were raising from the very outset. Those leaders, our leaders, heard those concerns and many advocated fairly, yet we still find ourselves facing substantial cuts and organisations are labelling the current situation as a ‘crisis’.

Or is all this being hyped up so certain entities can protect their own interests? You be the judge of that.

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 Realities Of Managing My Own Disability Support

After nearly two years of being the employer and client of my support staff, the lessons I’ve learned along the way were ones that I was completely unprepared for, and other disabled people may be too. 

Support for disabled people to learn about how to be good employers is going be a critical aspect of the new system which prototypes in the MidCentral beginning this October. Some aspects of that new system have already been practiced in the Waikato under the Enabling Good Lives demonstration, and I can say that for myself personally, I would have benefited greatly from some hands-on training prior to becoming an employer of my support staff.

Not that people actually have to take on this role if they don’t want to, they will have a choice about that, and I suspect that many will leave the direct managerial responsibilities to a third party. In a lot of cases, that may be a wise decision because being the direct employer does come with a lot of time requirements, and disabled people who choose to go into the new system actually want to spend more time focusing on other things.

There will be options to have a provider manage all the day-to-day HR requirements, including payroll and the hiring/firing aspect. You can also choose to have something of a hybrid of both, where you or your family can manage the money side of things and just pay a monthly invoice to the provider.

Like others in the Waikato during the EGL demonstration, I was in the unique position to have experienced the realities of self-managing using both of these approaches.

When I first transitioned to living independently, I hosted my funding in a bank account but chose to have a provider manage payroll, rosters, and the hiring of new staff. Six months after doing things that way, I transitioned away from a provider and took on the direct employment of staff, which included drawing up contracts, negotiating pay rates, organising rosters, and doing payroll every fortnight. 

Each has its own pros and cons, and it will come down to the personal preference of disabled people and families based on what is important to them. Many don’t want the hassle of taking on the responsibilities of being an employer, they just want to be in control of where and when the supports are delivered.

But at what cost? 

When I was using a provider, I found that it wasn’t always as simple as saying I wanted X, Y, and Z on this particular week. When you couple that with the costs that providers will charge for their own overheads, often it can end up being slightly more expensive per fortnight than it would if people took care of all the management themselves. 

The difference wasn’t major but it was enough for me to justify making the leap to being an employer.

But the struggle with that is learning about the responsibilities that being an employer presents, including the negotiation aspect and the complexities of employment law. In my case, I didn’t feel adequately supported to make that transition but it was one I needed to make nonetheless due to the need to remove the impacts on the budget that the overheads of the providers were having.

Part of the issue, as always, is ensuring that disabled people and families are informed about what services are out there. For example, in the Waikato there is a company called FuturesNZ that can help with employment networking and solutions. I heard about them through my Connector/Tuhono, and there are also plenty of resources online that can help with building employment contracts.

Disabled people who choose to be employers must be equipped with everything they need to know before making the transition into what is a position that comes with some serious legal ramifications if it goes wrong. Because when it does go wrong, and I know this from personal experience, the legal costs will come out of your support budget, therefore having the potential to impact directly affecting your ability to pay your support workers.

This is where things like capability funding for groups of disabled people and families become important, and it’s great that this will be available in the MidCentral during the prototype. It would be great to see a series of workshops that provide that hands-on employer training and advice for disabled people and families who choose to take the leading role in the day-to-day support.

The Realities Of Managing My Own Disability Support

Apart from the gigantic learning curve, my experience being directly responsible for the employment and management of my support staff has been a rewarding experience.

The important thing to remember is that the people who support you are just that, people, and they’ll all bring different skill sets to the table. They’ll have days where they exceed your expectations and days where they may not meet them, and how you manage all the different factors of the employment situation is ultra important because all these factors contribute towards what can be an incredibly vibrant or terribly toxic working relationship. Another big lesson I’ve learned is about the importance of being a good communicator and having the ability to have those tough conversations when required. 

 

DSS Transformation: What About Disabled People In Residential Care?

OPINION: Those with high and complex needs requiring 24/7 care may face limited opportunities to move out of residential care when the new DSS begins in the MidCentral from October 1st.

All current DSS users in the MidCentral will be eligible to transition into the new system from October 1st, but comments made by DSS Transformation project lead Sacha O’Dea suggest that there is still a lot of uncertainty surrounding viable options for disabled people living in residential services wanting to live on their own.

Disabled people requiring intensive support are referred to as those with high and complex needs. Typically they require one to one support on a 24/7 basis and can have a variety of different physical and intellectual conditions. Support arrangements of this nature often occur in residential care group homes run by the MoH and predominantly feature three to five live in residents and support staff working shifts. 

This is the demographic of disabled people using DSS that are the most faceless and unheard sub-community within the greater disability rights discussion.

Currently, the personal support budgets of disabled people living in these homes are difficult to track and fully account for because they are thrown together with the budget of all other residents in the home in order to fund both the support and the running of the service.

During the latest Provider Q&A Session live stream last Thursday, a question about the options people living in residential care homes have in the MidCentral after October 1st was fired at O’Dea via the YouTube live chat. 

O’Dea was asked if the MoH had accounted for the personal support budgets of disabled people with high and complex needs that require 24/7 one to one support and what options would be available in the new DSS if a person wanted to move out of a residential care group home.

The response from O’Dea didn’t answer the question as much as raise some concerns about the scope of what might be possible for someone wanting to move out of residential care and live independently despite their high and complex support needs.

“There will always be limits on the funding that is available. We will be working with people to look at what is important to them and what are the ways they can achieve the kind of life they want within the funding that is available”, O’Dea said.

For a person wanting to look at living outside of a group home, O’Dea said that connectors in the MidCentral will work with people to look at different options before she suggested that different group arrangements could be explored.

It is about looking at what the different options are outside of the group setting or looking at other ways you could develop a different type of group setting potentially, but there will always be limits on the funding available”, O’Dea said.

Limited DSS Transformation Funding Will Hinder Disabled People In Residential Services

On the face of it, the answer O’Dea gave is perfectly valid and makes logical sense. 

On average, someone receiving disability support will be funded around $33,000 per year, but for those with high and complex needs, the budget could be well over $100,000 per year at its cheapest. Furthermore, decisions from Cabinet regarding the financial decisions for MidCentral rollout won’t be released for another couple of weeks.

But on the other side of the coin, if what O’Dea says is to be true, then the end scenario for a disabled person living in residential care could change very little to what is the current state of play now. What’s worse, many disabled people living in residential services already argue that they don’t currently get as much one to one support as their budget allocates due to staff shortages coupled with all the other needs of different people living in these homes.

In 2015, I personally visited a home that had seven disabled people living in a five-bedroom home, all of which had high and complex care needs, with just two staff on the floor. What I saw in this home was a situation of people just existing, what I heard was staff workers telling me that they simply couldn’t meet the support needs of each individual due to the demands of the collective, the lack of resources, and the seeming lack of care by the provider running the service. It all resulted in frustration on all sides, carers and residents, and a place of limbo that existed “until further notice”.

The notice, sadly, is still waiting to be given three years later. I often wonder, how does DSS Transformation help the likes of the people living in that house find a more independent setup in their community? The limits on the funding available, as O’Dea put it, indicate that options for people living in homes such as these will be limited.

What we are hearing more and more of during conversations about DSS Transformation is disabled people, finally, being able to have an opportunity to have a support system in place that is based on their choices and builds on their aspirations in life. That is the exact goal, and it may well be the reality of what happens in the MidCentral, but what exactly are the choices that those with high and complex needs will have once all the numbers are crunched and taken out of the direct/indirect support budgets set aside. (totaling $12.658 over two years).

Those in residential care homes should have the opportunity to live completely independently, separate of any group setting arrangement if that is what is most important to them in achieving the kind of life they want to live.

Documents Cited In This Blog:

Provider Q&A Session – https://www.youtube.com/watch?v=rQDdmnTYMh4

Ministers Media Release – http://www.enablinggoodlives.co.nz/system-transformation/transformation-papers/system-transformation-updates/april-2018-press-release/

Cabinet Paper Summary, April 2018 – http://www.enablinggoodlives.co.nz/system-transformation/transformation-papers/system-transformation-updates/summary-of-april-2018-cabinet-paper/ 


The Real Michael Pulman is a blogger, content creator, and public speaker with 26-years lived experience of disability based in Hamilton, New Zealand. Feedback to any of our blogs is welcome!

Disabled People Face Additional Complexities Finding Employment

The challenges facing disabled people finding employment are not just a simple matter of a discriminatory job market, it is also about the attitudes on both sides of the equation. The stats of unemployment don’t tell a lie, but neither do the realities facing disabled people, and the solution isn’t straightforward.

Almost every time I cite a statistic which shows that disabled people are clearly marginalised, particularly in the employment space, a familiar argument is made in response. The argument questions how many disabled people within these stats are able to and want to participate in employment, and/or education and training.

One person on Facebook recently raised the following with me:

With an already tight job market, they said, opportunities are limited depending on the disability and that physically disabled people couldn’t have done any of their previous physical labour jobs.

A fair and solid point raised, one I cannot question either.

This is where some of the arguments about blatant discrimination toward disabled people in the workforce begin to fall over. It isn’t as simple as what the stats suggest, the answer to solving the problem doesn’t just sit with changing the attitudes of employers and getting more disabled people into jobs. We need to look at the quality of jobs disabled people get and the market also needs to expand. But it doesn’t end there, either.

Are Disabled People Willing & Able To Fix The Employment Stats? 

Last week, TVNZ revealed that many disabled people who are employed earn less than $5 per hour due to exemptions handed out by the Ministry of Business and Innovation. In one case, a person with Down Syndrome was being paid 89c for their work in the community service sector. Is this what you would call equitable employment and do we want to see it continue?

The heart of the issue sits with attitude and ability. Many, if not most disabled people, want to be treated equally and have the same employment opportunities as their non-disabled peers. In fact, one in five disabled people say that they want to employment and work as many hours as possible. But on the other side of the coin, the argument that this ambition simply isn’t possible for some, due to a variety of factors including access, geographic location, and financial benefit.

The reality for a lot of disabled people may always be that they are unable to work enough hours to ensure that employment is a better financial prospect versus getting a disability benefit each week. The Labour Market Survey for June 2017 showed that weekly income for disabled people was just under 50% less compared to non-disabled, and that disabled people were likely to receive most if not all of that weekly income from Government transfers (74% versus 26% for non-disabled).

And thus, we are still searching for a solution that doesn’t only fix the stats to make New Zealand look like a more equitable country for disabled people, but we are also wrestling with an ideology of what is possible for this diverse community. What is possible, is indeed, perhaps the most diverse reality of them all. 

 

Give Disabled People Choice On Identity

The disability community has every right to get itself hung up on the language that it uses, but disabled people have a right to choose how they identify with their disability as well. 

Identity matters to everyone in its own way. For many, identity gives a sense of belonging, and for others, an immense sense of pride. For a community that has suffered oppression for decade after decade, disabled people have often disagreed on what the correct term used to identify is, but a sense of belonging in the community has shown its benefits.

Service providers and Government use different terms, as do advocacy groups and disability rights activists.

Traditionally, the term ‘disabled people’ has been most commonly used, based on the social model of disability. That model states that systematic barriers, negative attitudes, and exclusion are the main contributing factors toward disabling people. Some people prefer this traditional term, but others prefer ‘impairment’ or ‘person with a disability’.

For those who are a part of the Autism community, often the word ‘autistics’.

Give Disabled People Choice On Identity 

As a disabled person myself, I don’t personally say things like “hi I am a disabled person” whenever I meet someone new. I simply introduce myself, with my name. I think this goes for a lot of people with disabilities. 

I have often found that these discussions about language can be counter-productive in large parts. But in recent times I’ve begun to challenge that thinking.

How can something so important, like identity, not be of high importance?

Identity is vitally important, and the key for the disability community is to step back and allow people to identify in any which way they like. A person’s’ disability is a part of their life, but it is not the totality of their life. How they choose to identify is entirely their right, as is how they choose to deal with it. I know some people with disabilities who choose to totally disengage with the disability community and just go about their lives expecting the same virtue as anyone else.

The point is, we can’t put a label on disabled people and say that they belong is this or that part of the community. They will identify and find a sense of belonging in their own way. Step back and let it happen.

Sex & Disability: The Sector’s “Complex” Topic

As I will state on social media when I post this blog; I want to reaffirm the message that I am writing this blog as myself, and not a representative of any organisation in the sports journalism field or the disability sector. These thoughts are entirely my own and are my version of events.

It was December 2015, and I’d been thinking about sex and disability for a long time. I knew that I really needed to turn my thoughts into action.

I started writing as much as I could about the subject. I came at it from the perspective of a disabled person, but I wanted to advocate for those who weren’t lucky enough, or brave enough, to make the decisions that I’ve made in the past. That’s right, seeing a sex worker, and especially losing your virginity to one, is a brave choice to make for anybody. It’s not the way you’d imagine that first experience going, and it’s very daunting. Following that, all the moralistic thoughts and emotions are another battle on their own.

Without CCS Disability Action, my employers at the time, the thing with TV3 would never have happened, and that’s when the subject reached a national audience.

To the surprise of nobody, the feedback was relatively negative. The ‘powers that be’ at TV3 Story turned it into a profile about a guy in a wheelchair asking the government to fund sex worker visits for all disabled people. However, most of the country saw it as the guy in the wheelchair wanting all the money for himself, and it sparked massive uproar.

In that story, I am quoted as saying that sex is more accessible for most people than it is for those with disabilities. What I should have said was that it was more acceptable, acknowledged, and probable. Because it is; people with disabilities are not seen as sexual beings capable of having sexual thoughts, desires, or abilities to engage in a “good” sex life.

The week after the story hit the media, CCS Disability Action wrote a column in the NZ Herald that labelled the topic of sexuality as it pertains to the disabled “a complex issue”. Due to my employment with them, I couldn’t exactly go public with how infuriated I was at some of the things Joy Gunn wrote in that column, and I congratulated her on social media.

The story had drawn so much criticism, and many people in CCS Disability Action were uncomfortable. An insider has informed me that the whole reason why TV3 got the tip of my work was because of a partnership between CCS Disability Action and a company called Ideas Shop.

Apparently, the story had put sexuality for the disabled into a somewhat negative light, but I was just glad that the light had been shone on it at all, because it was about time.

Joy Gunn left the organisation just a couple of months later.

One of the things I was disappointed in was when Gunn said that the organisation didn’t support my idea that the Government should fund “his need”. It was never about my needs at all, I was simply sharing the experience of how I had lost my virginity, I wasn’t asking the government to pitch in financially towards my own sex life.

Secondly, Gunn never once discussed the lack of access to money that many disabled people in New Zealand have. Yes, some disabled people work, and others are on the Supported Living Payment, but particularly in that second example, many aren’t able to save any money, let alone save enough to hire a sex worker.

In the months following that saga, CCS Disability Action released their first Sexuality, Gender Identity, and Intimate Relationships policy.

It’s my hope that CCS Disability Action and other leading organisations really do begin to start more robust discussion around this area. Advocating on sex and disability is indeed a very complex task, but it’s not an impossible one. Government funding sex workers for those with disabilities isn’t the ideal scenario, but it’s an option for some disabled people in very unique situations. Perhaps more research into such unique situations needs to occur.

Disabled Leadership: A dividing definition

Disabled Leadership is the hot topic for many organisations that support people and families with disabilities. But with all the great things going on, does there need to be a little more clarification about just what Disabled Leadership is?

The first thing to say is that leadership will mean different things to different people, so the exact answer to this discussion may never be clear.

For some people, leadership may be leading from the front in their own lives, and for others, it may be advocacy work or striving to make positive change in their community.

Many disabled people are now more firmly in control of their own lives than ever before. But does this mean that they are all leaders? Continue reading Disabled Leadership: A dividing definition