Why I am apprehensive about the NDIS? Part 3

Last year it was 20 years since I left high school. While there was a reunion I had no intention of going. Even if some of my favourite girls contacted me prior to it saying they were still single and wanted to see me I doubt I’d have gone.

Put it this way someday I plan to write a book and I already know the chapter on high school will be called hell on earth. No matter how many times I have said I hated it, no one has ever truly believed me.

I did have some amazing experiences and friendships during high school, that wasn’t the problem. The problem was that what I remember most is that everything was a battle.

I was forced to do subjects that were impractical meaning they were pointless. Science arguably the best example of this. Being expected to write a report on an experiment I could not possibly do remains one of the greatest mysteries of my life. Then again I also did physical education for too long because it was compulsory.

The most challenging part though was the countless meetings my parents and I attended. There were discussions about access issues, my less than impressive report cards and my subject choices were continually scrutinised.

A lot of this had to do with the inflexibility of the education department. I am still haunted by the fact that in year 12 the Maths and English exams were on the same day. Add in the extra time I was allocated and I was at school similar hours of someone in full time employment. I think this is a horrible situation for anyone but for people with disability it’s too much.

I didn’t have the capacity to understand it all then but I see now that in high school I was ostracised. I definitely feel my teenage years were taken from me. It is incredibly difficult to hear people talk about wagging, drinking, smoking and chasing girls in high school. The memories of having fun from that period of my life are very few.

And while my VCE results got me to university, I let more tears out about them than anything else. I think regrets are stupid, I just felt my score didn’t reflect what I had done in the year. It was a demoralising end to a dark part of my life. The scars from feeling guilty for wanting what most other people my age wanted will always be with me. Mostly because while we are taught the harder you work, the luckier you get this is difficult to comprehend. For people with disability the effort that is put in, generally isn’t worth the reward.

Yet for all the depression I went through I am grateful. At 18, while I didn’t know it all, I felt I knew my life would be excruciatingly unfair reasonably often. This meant I needed to be more determined and patient than most.

The real positives to come out of high school is that my love of heavy metal, wrestling and comics will last forever. My interests balance out the medical appointments and various other boring tasks that come with having disability.

It’s also propelled me to continually encourage people with disability and their families to strive for more. Knowing that I have missed out has proved to be incredibly valuable. Through this I have learnt to appreciate life and I seem to do this better than most. And while generally my focus is for people with disability to improve their lives, I am finding that able bodied people need help with this too. I am often in disbelief at what can consume a person’s thoughts. An average meal or an insincere text message can make people want to give up. Seriously if these are the biggest issues in your life, you are doing well.

The negatives from high school is I can feel the exact opposite. I wish there was research into the psychological impact accepting less has on people with disability. I have been explaining what I’m going through to get my new wheelchair and people are disgusted. And eventually it gets to why don’t I do something about it? Of course this is where sadly I point out that I’m working with the best people available and I have no other choice. To me this is the greatest challenge for everyone associated with disability. How do you improve your life when you have little to no concept of what better is? To add to the frustration the disability sector are largely responsible for this as they continue to support mediocre at best services. The sector’s inability to recognise this is in my opinion the biggest reason people with disability struggle in life.

And this is why I am writing a series of blogs about the NDIS. My high school experience is not the worst thing you will read about disability but that’s not the point. The point is that people with disability have been treated extremely poorly by services we were supposed to be able to trust. The NDIS continues on unaware of this. That’s disheartening when once again we were told it was going to be different.

Unfortunately mostly I hear about inexperienced planners with minimal understanding of disability and that the NDIS is another process full of barriers. Bizarrely though this keeps me motivated. I might not change anything but I can demonstrate we’ve had enough experience of that in our lifetime.  After all it’s disappointing that society is not more aware of this.

0005 New wheelchair, Paul Dini

In this episode of The Lachlan McLeod Show, Lachlan discusses the ups and downs of getting his new wheelchair. He then talks about meeting comic writer Paul Dini.

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0004 Sexpo, Sin City

In this episode of The Lachlan McLeod Show, Lachlan discusses his adventures at Sexpo. He particularly focuses on his encounter with Sin City Gentleman’s Club. He explains how this experience demonstrated that people with disability are far more capable than most truly believe.

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When it’s International Day of Persons with Disabilities you have no choice

Since 1992, International Day of Persons with Disabilities has been celebrated annually on December 3 throughout the world.

The theme this year is “Achieving 17 Goals for the Future We Want”. This notes the recent adoption of the 17 Sustainable Development Goals and the role of these goals in building a more inclusive and equitable world for persons with disabilities. This year’s objectives include assessing the current status of the Convention on the Rights of Persons with Disabilities and laying the foundation for a future of greater inclusion for persons with disabilities.

Once again I am left with that blank expression on my face. What does it all mean? Do I really care? Couldn’t there be a theme that is more appealing to society and God forbid people with disability and their families?

But if you think this is going to turn into a negative rant about International Day of People with Disability, you’re wrong. Spending 6 years working in a Council definitely changed my perspective. More importantly though it’s my friendship with Alisha where I gained a greater appreciation for the day.

I met Alisha during my time at Council and it’s impossible for me to not think about her on December 3. Even though this year it happens on a Saturday I am sure she is somewhere doing something meaningful. She has told me many times it’s one of her favourite days of the year. I am so impressed with what she’s said that it’s on my to do list to one year spend the day with her.

Through Alisha the resentment I had towards the day has subsided. I am too stubborn to let it disappear. Now my frustration and disappointment is more focused. In my opinion International Day should be like a public holiday.

The human rights aspect, the eternal struggle, let’s put it all side for one day. How about the world is a better place because people with disability are in it? Without doubt highlight what people with disability are achieving in all forms of life. Not just athletes with disability.

And what about the wonderful disability sector. Attendant care agencies in particular could do so much. Free passes to screenings of films about disability. Have a guest speaker talk to the people you manage. Combine with an employment service to showcase opportunities for people with disability. The options are endless and while there will be plenty going on it’s not enough. This year I only received one invitation to an event. That’s incredibly disheartening.

Because as content as I am I never lose sight of the fact that people with disability need assurances. International Day is the perfect time to give these assurances. To show the world, people with disability and their families what can be done rather than what can’t.

And obviously it’s alright to be disabled. It’s actually more than alright. I will drive myself mad proving this. I am dedicated to this every day but it’s nice to have a reminder every December 3.

So as always happy international Day to you Dale. Accept that we are wheelchair brothers for life.

And Alisha I should write a blog about your wedding day at some point. Until I do just this one story, which sums up everything.

I just made it in time for Alisha’s wedding, somehow finding a position where I could see without being disruptive. This is always difficult particularly when you don’t know anybody. Not being traditional Alisha and now husband Simon seemingly came out of nowhere and are at the stage area ready to go. As a man and someone with disability my biggest fear is whether I have an impact on people so what happened next is something I’ll never forget.

Right before the wedding started Alisha looks at me and asks if I got there alright. She then asks if I can I see properly. I nodded quickly thinking for goodness sake get back to getting married. Needless to say our friendship is a little significant.

 Happy International Day Alisha, wish I was with you.

0003 All Star Comics, Sexpo

In this episode of The Lachlan McLeod Show, Lachlan discusses Local Comic Shop Day/Back Issue and Toy Sale at All Star Comics and Sexpo. 

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0002 Trump, Proposition 60, All Star Comics

In this  episode of The Lachlan McLeod Show, Lachlan discusses Donald Trump's victory and Proposition 60.

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Why families need support too? Part 1

As the electric current charges through my wrist my pain threshold is tested. It continues the longer the machine stays on. Just when I feel like I can’t take any more my beloved doctor says turn it off. I breathe a sigh of relief whilst being injected with an extremely long needle. I don’t know how many injections I receive because I am not in the best frame of mind to concentrate on anything. Soon enough the needle is removed, I am cleaned up and heading home, relieved I only require Botox every six months.

Afterwards I settle down quickly and then my father brings me back to earth. He tells me that it’s hell watching me go through that. With my father nearing 70 I am surprised by his reaction. In my mind he has seen it all and it’s not that bad compared to what else I’ve been through. So hearing this from him was the reality check I needed to get back to writing.

In recent years I’ve become clear about what my purpose is. I want to break down stereotypes to improve life for people with disability and their families. I have been reasonably committed to the family aspect because of my own experiences. Having said that it has been from listening to others that made me realise more needed to be done.

Let’s get the biggest issue out of the way early. As accepting as I am you are never going to hear prospective parents say if all goes well our child will be disabled. This doesn’t mean parents don’t love their children no matter what or who they are. It’s recognising that there is shock and depression that comes with families with disability. The impact and effects lasting a lifetime, as they should.

For starters medically there is endless appointments. It could be x-rays, operations, procedures, tests or equipment and that’s not giving it much thought. There is also no getting around it, particularly if you’re taking life seriously. Currently it seems like I have more appointments that relate to my disability than ever before. To ease the tension, I constantly joke that father son bonding time happens in the waiting room of hospitals. As compassionate as I am towards parents in similar situations I still consider this the easy part.

The most challenging part I believe is the eternal struggle. Families with disability find themselves in a world where they have to fight for everything. Whether it be getting an education or a supposedly routine family outing it’s made more difficult than it needs to be. The scrutiny you are put under for living life is absolute cruelty. There is the constant stares from society who make it seem they want disability to remain hidden. Worse still is to be continually asked that horrible question why would you want to do that? I don’t know what is more upsetting about this. The amount of times it’s asked or that it’s generally so called disability experts that it comes from.

This is why I find it incredibly unfair when families are seen as a hindrance to the progression of people with disability. In many instances this is true but it is an easy way to look at a complex situation. Parents want to protect and do what is best for their child. Faced with a relentless battle that shows no signs of ending I am never surprised to see families with disability jaded about it all. I myself admit that it would be easier if I just stayed at home.

So rather than just highlight the problem and in many ways only state what we already know, I thought I would offer up some advice. From the NDIS to all other disability services it gets down to what are you actually offering. Will you be able to lessen the stress/pressure on people with disability and their family? Are you going to be able to improve the lives of people with disability and their families? If the answer is maybe, please come back when you can definitely do this, we have enough going on as it is.

And as for therapists, planners and doctors try to remember that what you see is for a limited time. The more interested and involved you are the better life is. Usually people with disability and their families feel like they are working against someone. If you can demonstrate that you’re going to work with them you have removed a huge barrier.

Which of course leads to my final and favourite point. Imagine if the needs of people with disability and their families were taken more seriously. This could mean we end up having more time. This could lead us to spending parts of our week having fun.

Although there is probably a form that needs to be filled in to assess whether I’m entitled to have fun. Then I will be put on a waiting list and sometime in 2018 someone will visit me to go over how I intend to have fun. From there I will be told I can only have some of what I originally asked for. I will break the news to my family and we will shake our heads in disbelief, mostly because we should have predicted this.

For those that are unaware of how the disability sector works yes I am joking but no I am not exaggerating. That is pretty much what people with disability and their families go through on a regular basis.

And the sooner we get away from this the better. Something I’m obviously determined to do.

Why I am apprehensive about the NDIS? Part 2

I am officially over the NDIS. Once the Turnbull Government started talking budget cuts, I became incredibly disillusioned. Even though I have been suspicious from the beginning it’s devastating that my life still comes down to money.

Adding to my frustration is that autism seems to be the only disability getting any mainstream attention in regard to NDIS. In time I will write a blog about the hierarchy of disability, which is detrimental and unfortunately does exist. Not surprisingly I feel men who have been a quadriplegic their entire life are a long way down the list. But this isn’t why I am disappointed

No, I’m impressed. I just wish that whoever is advocating for people with autism would take on every disability. At the very least could they show us how to promote ourselves. It would help us all and possibly give disability a more united front.

I also got my first look at a NDIS plan. That wasn’t too bad and seemed as it was relatively easy to work out. Then I started to read the NDIS price guide. It contains codes for specific items and the costs associated with them. As a sign that I haven’t given up I will dedicate a blog purely to this, when I have made more sense of it. This will require me to mentally accept that this is how the NDIS is going to be implemented, which will take some time.

Maybe I am the only one but I thought that if people with disability and their families were asked what they want, there would be a common answer. Less bureaucracy. This would mean less stress and less complications. In my case this would mean I would have more time to pursue my other interests.

There is so much to write about in relation to this. Basically though it’s what upsets me most about being disabled. Something I have felt since I was a teenager.

To get the most basic of my needs usually requires metaphorically jumping through hoops. Even when you are working with like minded people it’s draining. And honestly it’s destructive. How could it not be?

After all I am constantly having to prove my disability and my worth to people who supposedly understand my needs. Giving the price guide a brief read was the final straw that demonstrated the NDIS not only wasn’t going to change this, it hadn’t taken it into account.

Now I could have kept reading, which would have led to extensive cursing. Mostly at myself for not doing an accounting degree. Thankfully while I’m not perfect my mental health is important to me so I knew what to do.

I needed to get away from the NDIS and get involved in something else. The universe must have been listening because the right opportunity quickly presented itself.

I make no secret of my love of professional wrestling. I could go on about it for hours but I won’t this time. Primarily once I understood the importance of being able to overcome adversity, wrestling became a key part of my life.

With this in mind I thought Melbourne City Wrestling (MCW) were going to give me some much needed inspiration. In the week the budget cuts were announced I would hopefully see JuiceXT become tag team champions.

For me this  would be a dream come true. The team comprises Mr Juicy a man who is way too similar to me. He is entertaining with great comedic skills. So much so that his wrestling ability can be underestimated. To make matters worse we met after a show. He told me how he was having trouble with the flexibility in his legs.  I quickly interrupted saying I understood and he gave me a look as if he had said something wrong. I followed up with don't look at me like that you’re always making fun of yourself, which was the beginning of our bromance.

His partner is JXT. I laugh at myself when I think of him because in reality he appeals most to girls in their late teens and early 20s. To me though he is the nicest man in Melbourne a nickname I gave him soon after we met. He constantly mingles with the fans, never making it seem like he’s going to effort. In fact I think he’s so nice it goes against him. I had lost count of the times JXT had been denied title opportunities, something that increasingly frustrated me. It had got to me that I had forcibly told him that it was one of my missions to see him win a MCW title.

To add to the anticipation the brains behind Mr Juicy had taken notice of my Facebook updates about the importance of them being tag team champions. He said that when JuiceXT won the titles he would stand on the back of my wheelchair and I would drive him around the arena. This definitely added to my excitement.

So at MCW At Our Best I was there ready when the unthinkable occurred. The tag team champions The Estate walked out. Purposely losing by count out because the titles can only be won by pinfall or submission.

I was crushed. I thought they would probably lose with their first chance but the way it transpired was disgraceful. As I saw it pretend or not, this should not have happened. The fact that it did meant JuiceXT weren’t being taken seriously and if they were not careful they'd be overlooked. Something that is frighteningly similar to the battles I face on a regular basis.

The other concern was that it looked like I was the only one that cared.  While I was prepared for the challenge I was worried I’d be reinforcing stereotypes (someone in a wheelchair complaining because that’s all we are capable of).  Once again I knew I had to get over myself if I wanted to make a difference.

So I took to Twitter saying the match was as an injustice thinking it would probably be lost in cyberspace.

In less than an hour I was proven wrong. Mr Juicy responded to my tweet and put it on his Facebook page. He encouraged his fan base to harass MCW management with #JusticeforJuiceXT. I didn’t need to be told twice and mentioned it as much as I could.

About a month later at MCW Ascension JuiceXT became the new tag team champions. Mr Juicy as promised did get on the back of my wheelchair after the match. Not only this I was able to kiss both belts just like one of my idols Bret Hart would have, which is the ultimate sign of respect in the wrestling world. Rather than go through it all just look at the photo below. It sums up why it’s one of the best experiences of my life.

For starters because people with disability have lives and can participate in all areas of life. The man behind Mr Juicy and I have been in contact since Ascension to discuss this blog. Without him giving away too many secrets I wanted to know the influence #JusticeforJuiceXT had behind the scenes. He indicated I had helped initiate how they won the titles. I have also managed to raise my profile with MCW. People have noticed that I am taking them seriously but let’s get back to NDIS.

In that photo I am not contemplating the NDIS whether it be good, bad or indifferent. I look like someone that doesn’t need it, which leads to the question. Is the NDIS going to help me progress with my life? I have serious doubts. It doesn’t seem to be lessening the load on people with disability and their families.

The defence is this isn't what the NDIS is aiming to do. This may be so but by not continuing to make the point I am neglecting my role. That being to talk about the realities of life to assist people with disability and their families.

I have accepted that fighting bureaucracy is what I'll be doing forever. This doesn’t mean I have to like it. People with disability and their families have endless appointments and meetings, many of which are a waste of time. The effect this has is not spoken about nearly enough if at all.

I know the NDIS isn't doing enough about it, simply due to the amount of fear it has created. This is particularly difficult to comprehend because if I were to take society’s view of people with disability I wouldn’t leave the house. Of course I am committed to breaking down this barrier. Not all of us are though so it would be great to see the NDIS recognise this. I feel I am on to something with the E words so I’ll keep repeating them. Encouragement, empowerment and effort, that’s what people with disability and their families need most.

And for those that think I am being pessimistic about the NDIS I can see what you're saying but I disagree. I think I'm being very positive because I am  sick of missing out. And this will always be the message to people with disability and their families, don't wait for the NDIS. Look outside the sector for opportunities and experiences.  It’s the best way to learn what you actually want and need.

Because when reflecting on the significance of #JusticeforJuiceXT it is obvious. I got something I wanted and that hasn’t happened enough. And now that I am having experiences like this my perspective is changing.

Like everybody I am wanting more and so now I see how the NDIS is not going to be enough. Given this I am determined to find alternatives. As disappointing as this sounds I suggest people with disability and their families do the same.

Why I am apprehensive about the NDIS? Part 1

Bill Shorten is a God when it comes to disability. There are people who have done more, but politically he is unsurpassed. He genuinely understands what people with disability need. I once heard him speak and it was a revelation. He had worked out that people with disability are being held back by bureaucracy and a lack of funding and resources. He was clearly motivated by this because he initiated the National Disability Insurance Scheme (NDIS). For that I will be forever grateful to him. It gave national exposure to the challenges people with disability face.

But that’s where my enthusiasm for the NDIS ends.

It claims to be a new way to support people with disability. Allegedly, for the first time, I can choose what I need. Something I consider both complicating and confusing.

As much as I will continue to avoid having a militant attitude I am dedicated to demonstrating the neglect people with disability go through. The description of the NDIS are just words to me. This is because it sounds similar to those frightening three letters ISP (Individual Support Packages).

ISP claimed to offer individual support and choice. It went on promising greater flexibility supposedly to meet your needs. In my case I would look to increase my personal care hours for a start. Then I would look at upgrading the equipment I needed. I didn’t even get that far. The funding I was entitled to only covered my current personal care schedule. I was ineligible for more hours and there was nothing left for anything else. Eventually I found out I could obtain some equipment with an ISP. In arguably one of the worst meetings I have ever had I was told, in my home, I could get funding for equipment. All I would have to do is reduce my personal care hours per week to save up the money. Needless to say I didn’t take up their so-called generous offer and am still waiting for ISP to give me something useful. It’s because of situations like this that a familiar saying when planning for people with disability is “you have choice, providing it's on the list in front of you.”

This is where NDIS concerns me. ISP is just one of the many initiatives that have let me down. State Wide Equipment Program, case managers, employment services, it goes on. NDIS appears to be oblivious to all this.

If I am asked what I want my response is for Sting to win the WWE title, JuiceXT to become MCW tag team champions and Saxon to tour Australia. Let me be clear that all that is important but it is to deflect away from my disability. This is because the question what do I want scares me. Will the NDIS allow me to create a life with attendant care hours that are flexible to my needs on any given week? Can I receive physiotherapy, hydrotherapy or whatever other therapy I may need in the future? Will I be able to get equipment I need within a reasonable timeframe? Does the NDIS planner understand the sector and therefore will encourage me to ask for more? I have two years to contemplate all this but I have low expectations and can’t wait for it. Everyone I trust in the disability sector tends to agree telling me “don't expect it to change your life.”

I have much more to come on this but it would be nice to know that the NDIS provided guarantees. With there already talk of decreasing the budget there is already compromise occurring. This again makes it seem like it’s going to be full of false promises and that’s never a good sign. NDIS could very well be history repeating itself.

And this is probably my biggest fear.

The way it’s been presented it’s like I’ve been asked to ignore my life to this point. A common phrase now in the disability sector is to be NDIS ready. Organisations are scurrying around worrying about what this means for them. Supposedly they may lose business. This deserves more attention but simply I don’t know what the worry is because NDIS won’t mean less people with disability. So I believe most agencies are pretty safe. A genuine question though is will there be the same effort put into getting people with disability NDIS ready? I certainly hope so because I have absolutely no shame in saying I am not ready for it and I don’t think it’s fair that I should be.

I’m sure I’m not the only one that feels this way.

It’s not even a holiday

Paul and I really have been through it all. Whether it be Screaming Jets gigs, Melbourne Storm games or just hanging out, some of the best times we have had are with each other. Not even him moving interstate, eventually settling in Canberra, could stop our friendship.

Life, however, isn’t always about having a good time. Tragically, Paul’s son Jack was diagnosed with an inoperable brain tumour last May. While he courageously fought through it he recently passed away. He was only seven and if that doesn’t make you appreciate life then nothing will.

Without doubt one of the most challenging aspects of life is that it doesn’t slow down. Rather than take time to deal with this loss my time went straight into how I was getting myself to Canberra. Making sure my brother would be alright to make the journey with me the major priority. Too many assume this is because of the personal care I require. It is far more than this. My brother is someone I genuinely want to travel with, which reduces a stack of stress. I could go on but he would already think I have said too much. Then there was the matter of getting a motel, a van to get us there along with packing, etc.

I got most of this organised in short time. Unfortunately getting a van proved to be extremely difficult. Flying would be quicker and would make sense for most people. For me, though, this was not the best option. Unfortunately I am not allowed to sit in my wheelchair on a plane. This causes me major discomfort and I have generally had enough before the plane takes off. And we were still going to need a van when we were there, particularly on the day of the funeral, so that I could get to everything with a minimum of fuss.

It turns out that this is a busy time of the year if you want a wheelchair accessible van. My preferred choice, a company called Wheelaway, did their best to help but could not provide one. As frustrating as this was it was compounded by the amount of emails I received from friends suggesting them. It’s like they have cornered the market. Somehow I doubt they feel this way and probably wish there was more demand for their service.

By chance Gary (a man who knows too much about me) came over. I told him about the dramas of getting a van and he started typing ridiculously fast on his laptop. He was suggesting companies I didn’t know of. He then said he would make some calls for me. I was taken aback that he was genuinely going to take on some responsibility. He was annoyed that I don’t ask more of him so it was a win-win situation. After going through a reasonably long process it seemed that we had booked a van through Europcar. Of course when I check my emails the next morning the booking has been cancelled. I let Gary know and he responded with a selection of words that can’t be repeated. He was surprised that I took the news well and forcibly informed me that this wasn’t good enough. He was right. Unfortunately I don’t have enough people pointing this out to me. Pushing me further he said I should put my predicament up on Facebook.

Something I reluctantly did. This led to David Clarke, the CEO of my attendant care provider InLife Independent Living, passing on some more than useful contacts. First there was Cliff who came close to finding me a van. When this fell through he put me in touch with Naz who had located a van through Budget. I was able to book it for the time I needed it and then could finally move on to the countless other tasks I had to do. As an aside I enjoy using the term brotherhood and already with Cliff and Naz I feel I have become part of the spinal cord injury brethren.

All this means that my brother and I were in Canberra to celebrate Jack’s life. To be there for Paul and his wife Karyn as they went through something nobody should have to is something I’ll never forget. My brother and I both agreed that we didn’t know how they did it as we left Canberra emotionally and physically exhausted.

David recently asked me to write about my concerns in regard to the NDIS. I will get to that in time but this experience brings up a lot of what I think is missing. The disability movement (if there is such a thing) is gradually moving in the right direction. There is still not enough emphasis on removing the barriers. I would like to see a time where a service provider when hearing of this situation would say “We have a van for you. Now you get back to arranging everything else you need to do but if there’s anything else we can do, don’t hesitate to ask.” That would be an agency that understood people with disability. That would be an agency you could trust. Is that where NDIS is heading, I don’t think so.

And the backlash against inspiration porn goes on. I will be writing about this at length but I warn you unfortunately it’s not a turn on. I understand the resentment by the many disabled bloggers out there. What’s frustrating is what is deemed a priority in the world of disability. When we know that basic needs are not being met it's a struggle to comprehend why inspiration porn is getting so much attention. I wish other issues were being discussed as passionately.

Because sometimes we all need to get some perspective. I know that’s what Jack taught me. He will still be letting everyone around him know that the only teams that matter are the Canberra Raiders and Greater Western Sydney Giants. Just like myself he will be telling people that the best superheroes are Batman and Spiderman. And most importantly he will be telling me to stay focused because life is too short.  A part of that being to call his Dad to remind each other to have as much fun as we possibly can. Don’t worry Jack, not only will I do this for your Dad but I'll do it for as many people as I can, including myself.

Sometimes You Have To Lose To Win

There are so many misconceptions about life with disability. It would take a long time to list them all. For me one of the biggest is that all the complexities in life are associated with the disability. If only it was that simple. It is my mission to dispel this myth. The disability side is generally boring and is made complicated by bureaucracy. I have asked people in the disability sector when are you going to make this easier? Adding in because when you do we can get back to living our lives.

People with disability aren’t always the best with this either.  There preoccupation with their specific needs often making them seem like a victim. Hence why I attempt to draw attention to other parts of my life. The experiences whether good or bad that are about me as a person I feel are more interesting. They are more useful to people with disability and society as a whole because they show that we are all prone to a range of emotions.

While I felt I was acutely aware of this in my previous job as a MetroAccess Officer I learnt this the hard way. The role was to assist the community to be more inclusive of people with disability, something I regard highly. I feel it is the pinnacle of what you can do in disability in this country apart from personal care.

Having left last year I can now say I was in over my head, while I was there. I had no experience in the demands of the role and I needed to be assertive. Not only that I had to be with women.

The male/female dynamic is so pivotal to men with disability that it deserves a blog on its own.  Whether it be my mother, aunt, sister, doctors, nurses,  therapists, women that got my attention for reasons I can’t explain (not that people with disability ever think that way) they all have one thing in common. They’re bossy. I say this because I listen to them more than anyone and they get luxuries from me without even asking.

Upon starting the role I knew this would be a challenge. I was working in the Community Development and Social Policy Unit, which was predominantly women.  It didn’t take long before I was taken with everyone, I definitely felt I had acquired another family.  2 in particular Katniss the Unit Manager and Barbara my supervisor have had a lasting impression. As much as I would like to say work is my number one priority, managing my disability comes first. Given this I needed to be careful about the time I was in the office and what I would commit to. But I had some strict rules. Both Katniss and Barbara could call me at home any time they wanted. And most importantly if they asked me to come in for a meeting or event I would be there.  Rules, which still apply.

My respect for Katniss began before I started the job. She was on the panel that interviewed me and because of that always seemed to understand my life.  In my first year at Council I worked 22 hours a week, which was too much. Going into the second year Katniss advocated for me to change to 16 hours per week. I always appreciated this because while I wanted it to be about the work I did need people to be aware that just getting to the office wasn’t always easy.

Katniss and I are also very similar in the way we approach life. We are able to change people’s perception through our personality something we take seriously. I have started saying that I’m more willing to embrace my difference and that is certainly due to the time I spent with Katniss.

And then there’s Barbara. We have what I consider the best kind of relationship because we are the only ones that understand it. She is one of the few people I know that has little time for my humour. It’s not that we don’t have fun together, it’s just that to work together required us to be anything but superficial. There is a term in disability called person centred planning, something that Barbara and I perfected. There will be more about this in time but I have no doubt. Barbara became my supervisor, when our team was restructured. Not everyone was happy about it but I had no complaints because my work improved immediately.

It was out of our catch ups that a project began to formulate. Barbara had gone to great lengths to build my confidence. Continually making me aware I did have the skills for the job. She was especially taken with ideas I had about employment. She was so impressed she told me I needed to turn them into a disability employment strategy. I tried valiantly to say my role was to implement projects not write strategies, but I knew what would happen. Yes I wrote a disability employment strategy. It was actually ready to go through the process of being endorsed by Council. I was pleased and was looking forward to implementing it, but then I was put on a different path.

Katniss found out what I had done and said it needed to be an inclusive employment strategy. Something that encompassed people from culturally and linguistically diverse (CALD) backgrounds, people with disability, Aboriginal and young people. This made sense to me except there was a twist. I was going to lead the project. I didn’t see how that was possible. I wasn’t qualified. I didn’t even know why I was considered. Although I did think that I might have been further ahead with my ideas about employment than others. Still I was reluctant, but I was preparing myself to do it. After all it was a struggle to say no to Barbara, I couldn’t say no to Barbara and Katniss. So sure enough I begun to write it.

I thought the process for the strategy would be like writing music. Everyone would contribute and I would put it all together. As I saw it I could obviously do disability, the other areas would need to be written by others. This isn’t how it eventuated. Aside from Barbara I didn’t get much advice and I couldn’t generate interest in writing it the way I intended to.

I seemed to be going in circles. I had written a draft that I couldn’t move forward. I was uncertain of what I was supposed to be doing. Adding to the confusion was that I needed to define inclusion. Eventually I came up with something but what I believe is that inclusion is just like love, impossible to define but you know it when you feel it (I am claiming this as an original quote).

This went on for months to the point I ended up taking some leave to clear my head. On my first day back in the office I met with Katniss and Barbara to go over the draft. Thinking it would be fairly routine, I wasn’t prepared for what transpired. I definitely thought that I should have stayed on leave.

Katniss nicely yet forcefully informed me that the strategy needed to be further along. She went on concluding with if the situation didn’t improve the strategy would be taken from me and given to someone else. I never like to go with my first instinct and this highlighted why. After hearing this I was thinking you have thrown me to the wolves, I'm not getting the help I thought I would and I'm sick of it. Go and give it to someone else, I didn’t want it to start with.

Of course this wasn’t how I really felt but it was interesting that I was having the irrational thoughts that come from being a man. I remained calm and began to focus intently. The possibility of having the strategy taken from me really got my attention. If that happened it would reinforce all the stereotypes I hate.  Something like the person with disability was given the opportunity, he couldn't do it so an able bodied person finished the job. Not only would this go against everything I believed, it would also go against the whole point of inclusive employment.

In amongst all this Katniss said something incredibly valuable. She said the strategy was my responsibility, something I wasn't clear about. My own naivety and insecurity had prevented me from understanding this. If you’re writing a strategy for Council most likely you are working with a team. However one person writes it all. The team makes suggestions along the way as it goes through the multitude of stages before being approved by Council. Realising this was a huge step. It was now obvious that I was being too tentative. While I was still having some man moments thinking I wish someone told me this sooner, I was now more motivated to do the strategy than ever before.

Barbara and I had our traditional catch up afterwards. She was concerned about me, which was a relief. I told her I was fine, although I was disappointed I had let things get that far. I knew that I had to be more willing to ask questions and not be afraid to seek help. Barbara then gave me some advice that worked out beautifully. She suggested I choose someone to work with to review the strategy.

Immediately I chose Anna. She was a new addition to the team, we were similar in age, she was the ideal choice. I let her know I was struggling and that I wanted her help because she would be able to give a fresh perspective. We looked over a draft and she said it wasn’t that bad. She thought it was close to being finished but suggested adding in more relevant policies (to give more context as to why the strategy was needed). I whispered to her I had previously done this but Barbara had told me to take it out. Without hesitation Anna patted me on the arm and said “You poor thing, no wonder you’re struggling.” From then on I felt I had the ability to do the strategy. Sadly Anna didn’t stay long but I was so grateful to her, I changed the days I work just to attend her farewell.

From there progress went along nicely. Management approved that the strategy be implemented and Human Resources were on board. I had also begun convening inclusive employment working group meetings. Something I felt was always completely out of my character.

Then at one of these meetings it happened. We were all looking over final drafts and talking about how will this actually work. The discussion turned to that there was no budget or resources for this and in what seemed a blink of an eye we decided not to do the strategy.

My personal life wasn’t going well at the time so this was something I didn't need. Knowing that was going on had made me more determined to get the strategy done. I always try to be understanding and I could see that this was a logical decision. This time though I gave in. The I’ll be all right, it’s for the best mentality was the complete opposite of how I felt. It was I have wasted 18 months of my life, nobody cares, even don’t they know I am disabled? I always knew people with disability don’t get what they want and this proves it. The fact that it came down to a lack of funding and resources didn’t sit well either. Having had to deal with that sentiment so often in my personal life, it was disheartening to have it reflected in my work life.

To add to the stress Barbara was on secondment for 6 months. I once described her at a team meeting as a calming influence so to not have her around with this going on was frustrating. Luckily I managed to see her racing through the foyer. She tried to rush off but I didn’t let her. I assertively said just wait and asked her if she had heard that we weren’t doing the strategy. And then it was like time actually stopped. No words were spoken but I was relieved there were no sharp objects around. Barbara remained silent whilst looking as angry as I had ever seen her. Eventually she asked if I was alright?  I had not expected her to react that way so I was a lot more at peace with what was going on. I was so taken by this moment I made it a part of my relationship test. Pretty much if a woman didn’t care that much about me, they weren’t worth my time.

Why did I feel this way? Well over time Barbara had nicknamed our catch ups the Cone of Silence (my favourite part of Get Smart) because of how personal the discussions were. Most of what we talked about goes to the grave but I worked out that we needed to be less secretive to help people. Something Barbara had often said that when the strategy was done I would not have to worry about a job ever again. This would be welcome news to any man. For me it was unbelievable. The countless concerns I had about employment and having a disability would all disappear. So to have it taken away was devastating at the time. Hence Barbara’s reaction was more than enough to stop me thinking of resigning or whatever other stupid thoughts I was having. The pity party was starting to come to an end. I can never appropriately put in to words what our relationship is but I’ll say that after going through all this, Barbara is stuck with me. She knows this, she just forgets sometimes.

Feeling less anxious Katniss then gave me all the encouragement I needed.  We always seemed to sit together at the right times that it couldn't be a coincidence. Generally with hilarious results, anybody would think we were still in high school the way we interacted with each other. On this occasion though at our annual planning day it was serious. Katniss began explaining how we didn't do the strategy even though poor Lachlan had done all this work.  I felt like I had received an award for my efforts. On many levels I had gone out of my comfort zone and to know this hadn’t gone unnoticed was very satisfying.

Settling down I pressed on with inclusive employment. While the strategy wasn’t happening many of the initiatives were incorporated into other policies. Something I was pleased to be a part of. Feeling reasonably content another opportunity arose. A Human Rights and Inclusion Policy was going to be written. Seeing as how I had done fairly well when I was unprepared I was ready to rock with this. Having missed out with the strategy I would be guaranteed to write this new policy. Katniss and Barbara would work their magic and away we will go.

I show some arrogance and I get humbled because this isn’t how it turned out. Now that we don’t work together I can say that the responsibility of writing the policy went to my friend (not colleague) Peter. There was no resentment towards him being chosen. To think I would be automatically selected showed I had a much healthier attitude about myself. The experience of writing the strategy was already starting to have a positive impact.

While I wasn’t going to write it, I was still a man possessed. I was focused about how we would approach it. I bombarded Barbara with ideas of what we should do and made statements that I was unmoved on. Primarily that we wouldn’t get too ahead of ourselves and that Peter was to be looked after. I ended up enjoying being in the driver’s seat (any excuse to use a sporting cliché and I will) but it wasn’t pleasant. Even though I now wasn’t I hadn’t lost sight of this and was adamant that he be supported as much as possible.  I would regularly ask Peter if he was alright with how the policy was going. This usually led me to aggressively ask him again because I felt he was unconvincing. Doing this let him know I was with him, wherever it took us, much like what Barbara and Anna did for me. Something I know he appreciated because we now have quite the bond. As I like to remind people we may not have signed a blood oath but we did commit to improving inclusive employment.

Once again I missed out resigning before the policy was finished. It wasn’t an easy decision but I needed to look after myself. My last couple of months though again demonstrated the effects that writing the strategy had on me. Barbara had given me the responsibility of organising International Day of People with Disability. This was something I always wanted to do and being my last major project I couldn’t contain my enthusiasm. To show I had developed when planning the event I indicated to Barbara and Katniss that I didn’t need their help. The stubbornly independent part of me had really kicked in. To be thinking that I knew what I was doing and that I wanted to be left alone was not like me. This may have been character building but it isn’t the best way to plan Council events.

I talked about the strategy a lot after it didn't happen but it wasn’t out of bitterness. It was because I gained so much knowledge from writing it. For anyone there are lessons in management and leadership. Strategies and policies I now know are written all the time. They can take years to develop and may end up not being initiated. I know that was something I took away from the experience. For me to write the strategy properly I had to get emotionally involved. During that period of my life I thought of little else. Working 16 hours a week I didn’t have time for much else either. This is why I became so passionate about supporting the person that writes the strategy. I understand that other people may be able to detach themselves better than I could, I also know that assuming people will ask for guidance is a mistake. That isn’t something that comes easily to everybody.

If it is applied to people with disability I think it’s a wonderful case study. Going through this process showed how my pre Council life had not been as kind to me as I thought. I had been let down by people that I shouldn’t have. I knew this but I didn’t realise the extent. In earlier blogs I have talked about the E words when it comes to people with disability. Encouragement, empowerment and effort, something the disability sector doesn’t understand. Because what this experience really taught me was how much I lacked confidence. And while I am not moving as fast as Barbara would like I know I have improved.

This is because I now allow myself to make it all about me. It may be taking forever to get my new wheelchair but that’s alright. I need to take time in order to get the best solution for myself. I am now fighting harder for what I want and show emotion when it doesn’t work out (something I felt I couldn’t do before).  I am definitely more assertive, even with women.

As for Katniss and Barbara I miss them both. They are still at Council and while I have left we have plenty more to do. I would like them to come join me on my journey to improve the way people with disability plan their lives but they have their own battles. We reconnected to get this blog done and as usual we ended up with a better outcome. The eternal optimist in me hopes that we will work on some more ideas from my time at Council. Since I have gone I am continually reminded of how significant my experiences there were. Many experts in the disability world would consider what I did during my 6 years an impossibility. This definitely influenced my decision to resign and certainly is the reason I became so driven by inclusive employment. It was time to show that it is possible.

And all this is my way of saying people with disability need to take more chances. I actually feel sick using the word chances because what I’m really thinking is living life. Being afraid of heartbreak, being employed, not fitting in to society, whatever other negative thoughts you can come up with limits your opportunities. Contemplate that for a while and see whether you want to keep living that way. We already have enough people telling us what we can’t do, we don’t need to be doing it to ourselves.