Loving My Life, Wasting My Time

Around this time last year I participated in a campaign for my attendant care provider DASSI. It was called I Love My Life.  I along with other people using DASSI’s services were Involved in a promotion that demonstrated why personal care is so essential. This saw me and my long time friend/advocate/bodyguard (the list goes on somewhere in there I have to admit he’s my carer too) Adam featured in photos and videos showing our relationship. Being a part of it was alright but I did feel uneasy about it all. We were rushed and there was too much focus on my interests. Sure it was nice to talk about wrestling and metal (both of which deserve more attention) i just felt we didn’t capture the significance of attendant care. Given this I was apprehensive about what would happen next.

Turns out I had every reason to be worried. The launch of the I Love My Life campaign coincided with the 30 year anniversary of DASSI. To commemorate both there was an event, which took place at Darebin Town Hall. While I was afraid of what would eventuate what did occur was more frightening than anything I could have dreamt of.

As soon as I arrived I was introduced by strangers to other people I didn’t know as if I was family. I can hold my own socially so this only bothered me slightly. The major concern that was increasingly clear was that I was the face of this campaign. I wasn’t the only one but for this event it sure seemed like I was. I sucked it up as best I could even though I felt I was being used. Optimistically I told myself it wouldn’t be too bad. After all I would be financially compensated and being a part of the campaign would lead to endless opportunities for myself.

I planned to be speaking to staff and new carers about my experiences. Hopefully I would be talking to people with disability making them aware of DASSI. I would definitely be meeting with potential sponsors to show them the importance of attendant care. Additional sponsorship would allow DASSI to offer more support to people with disability. This would make a huge difference because the funding the government provides is not enough.

These days I continually feel the need to get over myself, particularly when it comes to attendant care. It is the most important part of my life and I cannot survive without it. As much as I despise the words high needs, low functioning, it is the appropriate medical description. And while I don’t want to go into detail when I think about my daily routines there is a lot that needs to be done. Occasionally you see personal care in the movies and honestly it’s a challenge to watch. I don’t think I am ever delusional about my disability but seeing it highlights the reality of what I actually need. Legitimately being high maintenance and yet wanting to be independent will always be a struggle. In many ways though this is the easy part.

What goes over most people’s head (the disability sector being the most guilty) is everything else personal carers do. Even at the best of times it’s complicated to get out, so having regular visitors means I never get lonely. Through talking to my carers I am kept up to date with current affairs. Obviously that gets old quickly and we end up talking about each other’s lives. To have the ability to do this with a range of different people is something I refuse to underestimate. The bond that forms out of these conversations becomes unbreakable. I can’t speak for carers but I know the relationship is more than a service. I get that much needed perspective that people who can walk still have their issues. It also does wonders for my ego because meeting these people has given me the confidence to talk to pretty much anyone. The only major drawback is I wouldn’t mind more time on my own.

Then there is the fact that it lessens the time my family needs to assist me. This is still far from ideal but with parents who are both retired attendant care is more crucial than ever. They often go on holidays and have just got back from a 7 week trip overseas to see my sister who lives in Houston. And for those wondering how I felt about this? Well I practically dragged them over there. I was constantly reminding them how they should go there as much as possible while they still can. Being her oldest son I can get away with things others can’t so I often joke with my mother that she gets off lightly. Seriously though this proves why attendant care works. Without it I would be in a group home or living with my parents, possibly worse whatever that may be.

And of course it’s genuine friendship. Why this is even questioned annoys me as much as anything in this world. I couldn’t list everything I have done through meeting carers but I will name a few that stand out. Jerome a man that knows me too well wedding was particularly memorable. Incredible location, great speeches, a plan for me have a crack at one of the bridesmaids, it had it all. What I remember most though is Judith (Jerome’s wife) introducing me to as many people as she could telling them I was Jerome’s special friend. She was so insistent that I still get emotional about it all these years later. Well I also remember that my brother and I went clubbing at the casino after the wedding.  I am not sure what time we got home, I know it was late and that it’s a day I’ll never forget.

Before you even think about ringing me Sandy yes I am going to mention your wedding too. This was another spectacular occasion because for too long Sandy and I were worried that she may never get married. Mercifully Jason came along and I was taken instantly. In a joke that will haunt Sandy forever whatever she thought didn’t matter, he was definitely the man of my dreams. We had similar interests and he could cook. What else is there? Anyway their wedding was one of the most exhausting days I have ever had. And I wouldn’t have wanted it any other way. I left home at 10 in the morning and apart from a small break in the afternoon I didn’t get back until 1 that night. On the day I did a reading at the church, did all the photos and then did a speech at the reception. In amongst all this I had an absolute ball. I even managed to have a better time than Sandy who enjoyed it more in hindsight as she does.

Moving away from weddings it’s impossible to go past Adam’s wife Jo’s book launch. While there I got to meet Bill Shorten who I regard as a God of disability. I may have also spent some of the night flirting with ballet dancers. In my defence Adam was encouraging me but more accurately there would be something wrong with me if I hadn’t been.

I could go on but you get the point. Attendant care has created opportunities I wouldn’t have had. More truthfully it has given me a life that exceeds my own ridiculously high expectations.

Unfortunately DASSI didn’t recognise this. For my participation in the I Love My Life campaign I received a token gift. No follow up call, nothing. To aggravate the situation 6 weeks ago I found out DASSI is being taken over by  Independence Australia. That take over starts today. The letter sent out actually starts with we have good news for you. Once again the sector think people with disabilities are stupid. There was no explanation, no time to get used to the idea and we are all now contemplating our future. I don’t see any good news. I lied, it did give me something to use for this blog.

For any disability organisation to be taken over without proper consultation shows that there is a continued lack of understanding. People with disability need reassurances and guarantees from all their services. Attendant care providers should not have to be told this given the sensitive nature of what’s involved.

Therefore my quest goes on. Attendant care needs to be more highly regarded and people with disability need to be treated with more dignity. And while these experiences don’t change the fact that it’s a physical impossibility for me to get up in the morning, mentally it does make it easier. My purpose could not be any clearer.

The C Word

At the moment I am spending my time researching the National Disability Insurance Scheme (NDIS). It is proving to be a very disheartening experience. This is because it’s written in a bureaucratic, business style that in my opinion is a huge step backwards. It simply doesn’t recognise where people with disability are at in 2015. But I will leave NDIS to the experts for now. This blog relates to something else, which I keep thinking about every time I read disability policies.

From a young age we are all told sticks and stones, will break my bones but words will never hurt me. Something I have lived by for most of my life because I didn’t think I had much choice. I mean if I reacted to every situation where I was looked upon or treated in an unfavorable manner I would be angry all the time. Therefore when seeing inclusion take over in the last 5 to 10 years I wasn’t that impressed. I regard inclusion as a great concept, it just doesn’t represent diversity as well as it could.  For example there has been a tremendous effort put into guides about how to write and communicate with people with disability in recent times. Something I felt was unhelpful. To me having these documents available to the public made me feel more isolated from society than I already was. Whenever I read these guides I would get the same feeling. Great as if there isn’t enough to keep us segregated now we come with a manual. Furthermore I thought it was a complete waste of time because there are far more pressing needs in the world of disability than this. Lack of opportunities, funding etc immediately coming to mind. And of course I am a man I’m immune to all this. From physically challenged to differently abled, I have heard them all. I feel ambivalent about all these terms. To me it’s always been more of a concern for able bodied people. Meaningful words don’t accurately describe disability and long time advocates will hopefully agree with me that words don’t usually lead to attitudinal change. Well I must admit the grumpy old man does come into it too.  After all it’s not that long ago that Scope was called The Spastic Society.

Lately though I have been forced to give in. In my previous job there were times where inclusion and wanting to be considered an equal didn’t cut it. I would find myself in situations where I thought nobody with disability would be able to handle this. I would make light of it saying to my superiors you’re lucky it’s me, as I was determined to focus on the work.

Behind the scenes though it did take a toll. For the first couple of years I was fortunate to work with my mate Shawn. While he moved on we still keep in touch as often as we can. On the surface we have the typical male relationship putting each other down wherever possible. For me though he is one of the few people I know that understand my challenges. Those that not only come with having disability but also as a man (not that I want to reinforce his inflated status). Our many conversations have led me to believe we could do the NDIS better than anyone. Our version would still blow out the budget, it’s just Shawn would have the ability to convince people to give us more funding.

In recent discussions, when talking about my frustrations he came up with something I had not taken into account. He suggested there was a cultural sensitivity around disability that was not widely understood. Shawn as he does had made a significant point. The world doesn’t know enough about disability. In fact, the neglect that still goes on and the impact that has, is not well known.

Keeping this in mind I started to be more proactive. If the opportunity presented itself I would be more open to speaking about the realities of life with disability. This happened when a mate and I were talking about the disability sector and he mentioned the word clients. Shaking my head I said “clients that’s the C word in disability”. We both laughed, then stopped and reflected. It was clear to us that there was something profound about the statement. Maybe this was how I could raise concerns in a positive manner but I didn’t know how women would react to it. To make sure I tried it out on one of my poor suffering occupational therapists. When she was not offended I decided to stick with it.

As much as even I struggle to not express my feelings out of rage I don’t think this helps people with disability. The word disappointment is a far better word to explain much of what goes on. This is certainly the way I feel whenever I read or hear the word clients. Primarily it’s because support work agencies and disability employment providers have tarnished the word. In initial meetings these organisations will tell people with disability how they are valued and that they have their best interests at heart. Months, sometimes years later I have found myself no better off than I already was. When I have asked for more from these organisations (usually what I thought I was entitled to) I get a long list of excuses.  The government won’t allow us to do that, you have complex needs, it goes on. Hence my reaction to the word client. While I don’t need an excuse to quote Iron Maiden this is the ideal time to do so. In their song The Prisoner there is the line “I’m not a number, I’m a free man”, which sums up my sentiments perfectly.

What’s interesting is that people from the business sector are not used to this. Apart from client words like not for profit and nonprofit have lost all meaning. I think so little of these words that I was impressed when the founder of a new attendant care provider recently told me they were nonprofit for tax purposes. It was refreshing to hear such honesty. When it comes to attendant care providers it’s too often cost cutting over being helpful. Agencies removing penalty rates for carers on weekends and public holidays for business reasons makes life incredibly difficult. It becomes a challenge to trust an organisation that does this because they are putting their needs before mine.

And this is only skimming the surface. The problems that come from this are detrimental to people with disability. To be continually let down by those who are supposed to know better definitely has a negative influence. And even though there is change the disability sector doesn’t do enough about it.

What I reflect on is that I am not naturally assertive. To think about what I want and need is daunting. Mostly because history hasn’t allowed people with disability to think this way. Unfortunately this seems to be being ignored or worse people don’t know the problem exists. Somewhere like Inclusion Melbourne are closer to where people with disability are at. Sure they make it seem like we all need a hug (then again it depends on who is offering them) they just have an understanding others don’t. That being that business language isn’t the best approach to improving the lives of people with disability. For me it’s definitely the E words encouragement, empowerment and effort.

It’s always reassuring to think of a place that is leading the way that has nothing to do with disability. Which is why I can proudly say somewhere that gets it right is All Star Comics Melbourne. Wherever I go I seem to attract difference and the nerd/geek culture is certainly that. At All Star this is embraced and welcomed. Their annual Free Comic Book Day event a particular highlight as it has a festival like atmosphere. It is indeed a community there and I would be insulted If they called a customer (I know I’m not the only one). This is because I have too many deep and meaningful conversations whenever I am there.  That is if you feel the need for a toy A-Team Van is deep and meaningful, which I do.

Then there is Adam Goodes who has become an interesting person in Australia. Whether I agree or disagree with him or not doesn’t really matter. He continues to bring attention to issues that matter to him. He always at least wins half the battle because he gets people talking and this is the real problem.

When seeking advice for this blog I was asked, if clients is disrespectful, what would be a better term. A question that has come up before when I have been asked to edit disability policies. Whenever I see the word I always replace it with person/people with disability but there is no obvious alternative. And this leads to a more complex almost contradictory blog. This is because there are many labels that have been thrust upon me that are offensive for different reasons. Let’s just say that I find myself trying to separate myself from labels more now than ever before.

Clients just happens to be one of those labels. It’s not that it’s a horrible word it’s more that this and many other aspects of life with disability are not even debated. And people with disability continue to accept it, which makes it near impossible to improve. I think it’s time for a change.

If Sexton Loses We Riot!

Who is the most hated man in Australia? Many would say Tony Abbot.   Matthew Newton still comes to mind. Maybe James Hird or Shane Watson. If you survey the MCW Arena on Saturday night I am pretty certain there will be only one answer. Tommy Hellfire.

For unknown reasons he is getting a shot at the MCW title. Rather than looking forward to this match I will be more happy when it’s over. The build up has been excruciating. Hellfire a.k.a. the mumbling wonder has been delivering lacklustre promos for months. My mate’s Grant constant abuse while the has been speaking has been far more entertaining. Bizarrely the lead up has included no name wrestlers getting title shots. During these matches Hellfire has been attempting to help them win. This has led to my own verbal tirade. I mean it was blatantly obvious that Hellfire still wouldn’t be champion no matter who won the match. As usual I am taking it too seriously, then again if I didn’t something would be wrong.

As for the champion Elliott Sexton, I am impressed when I shouldn’t be. Generally I prefer smaller guys that I relate to and they usually put on better matches. Sexton though won me over some time ago. He can actually wrestle, is great with the fans and is the type of champion wrestling promotions need. Again I will mention Grant because without doubt he sent me the most envious message I have received this year. I simply asked him if he was going to the next MCW show a few months ago and he replied with “yes, trained with the champ this morning”. That is all kinds of awesome. My friend Sandy would be even more jealous because she needs someone to  stop her from fainting her every time she sees him.

Needless to say I am hoping for a Sexton to win in a squash match. No longer than 5 minutes would be ideal. Maybe Krackerjak will return to claim his rematch for the title.

Elsewhere there is a number one contender match for the Inter Commonwealth championship. All I saw was that JXT wasn’t involved. Given this I know how I would like this to go. I will attempt to get into the ring with a chair to take both competitors out to force a no contest. Before I get there Grant will calm me down, take the chair from me jump the barricade and take them out on my behalf.

I am getting carried away again, but that’s part of the fun.

Let’s Hear It For Wrestling

How can you like wrestling? It’s a question I have often been asked. Usually I don’t bother answering. It’s something I have had a strong bond with for most of my life. Put it this way whenever I hear horse racing called the sport of kings, I get offended. We all know this title is reserved for professional wrestling.

Sure there is the entertainment side and as important as that is, it only goes so far. What is appealing are the wrestlers that sacrifice and overcome the odds. I have an emotional connection to so many wrestlers that I can’t write about them all at once (it would go on and on and I would use up too much material). After contemplating it for far too long for this blog I decided to write about CM Punk. He likes Pepsi, comic books, was a great wrestler and was anti establishment. Definitely someone I could relate too.

I would rate the moment when Punk defeated John Morrison to win the ECW Championship as a genuine highlight of my life. It seemed so unlikely that it was unbelievable. Then there was the time on Raw when Batista (actually doing something useful) beat down then World Heavyweight Champion Edge and left him lying in the ring., Punk ran to the ring carrying his Money in the Bank contract.  Soon after, as Edge was struggling to get up, Punk hit him with the Go to Sleep and won the World Heavyweight Championship. Not having the technology I have now I watched this with my carer who was forced to endure it. He simply said you obviously enjoyed that, noticing I could not contain myself.

And of course there was Money in the Bank in 2011. In the main event Punk defeated John Cena to become the WWE Champion. In the storyline it was his final night under contract. Thankfully I watched this alone because while it didn’t match the ECW title win, it had it all. Cena lost, Punk won, it upset the WWE hierarchy and the crowd (his hometown of Chicago) was insane. It is one of the greatest moments in professional wrestling history. For diehard fans times like this are something else. You can’t help get involved in the journeys of your favourite wrestlers. And while it is all scripted there is always this feeling that it’s never going to happen. This is why It is so awesome when it does.

Locally this Saturday will see one of these moments. This is because the first MCW Intercommonwealth Champion will be crowned. The match is Mr Juicy versus Dowie James and I will be losing sleep thinking about it.

At the last MCW event both were given time on the microphone to talk and we were all captivated. My friends and I were torn about who we want to win.

You see Juicy is a crowd pleaser. It’s easy to assume that he is there to entertain given his natural ability to do so. To question his in ring ability though is a mistake. He has improved dramatically and in my opinion had the best match last month.

James on the other hand is almost the complete opposite. He is as good as any wrestler I have seen. It is somewhat surprising he hasn’t been MCW Champion. He is entertaining enough (his introduction with his continual rapid increase in height and weight particularly enjoyable) but is not as natural as Mr Juicy.

As I said choosing the winner is incredibly difficult. From a wrestling perspective it’s hard to go past James. I also feel like I have inherited him as a favourite as my mate Grant knows him personally. I haven’t forgotten either that the nicest man in Melbourne JXT again missed out on his shot, maybe he will intervene. What I don’t want is a heel turn (where a wrestler goes bad). I have been thinking that James former tag team partner Adam Brooks could return. He might distract James to give Mr Juicy the win. I have too much to think about this but it would be a way to keep everyone happy.

However it goes down though it will be awesome. I couldn’t say it any better than the MCW fan with a high pitched voice (who can take credit for the title of this blog) who said,  “I don’t care who wins”. I agree, although I won’t be able to relax until it’s over.

Once You Go Mac You Don’t Go Back

I am at a point where I need too much. The amount of equipment I require seems endless. A holiday would be nice too, sadly none of my doctors or therapists are suggesting that. The main priority though was a new laptop. It was only a matter of time before mine died and then what would I do. I need it to write emails and applications to chase up all the other stuff I listed above. And of course there is my blog. Appropriately this is the first one I am writing on the new machine. I’m sure it’s humbled to know it’s already having an impact.

I have had many laptops. Some good, some bad. No matter what they were all something I couldn’t live without. About 10 years ago when I was looking for a new laptop I made a radical change. My beloved brother in law Damien suggested I get a Mac. I was sceptical having always had PCs. Still he is someone that doesn’t take no as an answer and he kept dismissing my greatest fear. I am unable to switch on or off my laptop and have had too many nights stuck with them on. Knowing this Damien kept saying Macs don’t crash. Eventually I gave in hoping for the best.

To my relief and utter surprise I genuinely loved my first Mac. I still have it as backup and it was only replaced because it couldn't handle new software. The reliability was astounding. As time has gone on this has become even more important. During a week I'll use my laptop for work, social media, catching up with friends, it goes on. It plays an integral role in my life. I don't think there is enough significance placed on how much technology enhances the lives of people with disability. There certainly is a lack of funding. Why do I get the feeling that there is another blog in those last two sentences.

That will have to wait as I have plenty to do getting acquainted with my new laptop. And of course I already love it, I need to considering the amount of time I spend on it.

MCW Ballroom Brawl 2015

In recent years I have become a fan of Melbourne City Wrestling (MCW). Some friends are equally impressed and while many would probably dismiss it as second rate compared to other promotions, they need to check it out. The production quality is excellent (actually improving) most importantly though the wrestlers are comparable to anyone I’ve seen. The WWE obviously think so because 3 former members of the MCW roster are a part of their NXT brand.

I recently went to an MCW event at the Ukrainian Hall in Essendon. In amongst all the chaos I found out that Chavo Guerrero would be coming out for their next show. Unfortunately it was taking place at the Thornbury Theatre. I was informed that it was an inaccessible. I was disappointed, still I felt it’s a part of life and taking on staircases is not something I want to do. The best I could hope for was that potentially I could see him another way.

To show there is progression in the world my high school friend Grant messaged me enthusiastically. He found out that the Thornbury Theatre had just put in a lift and that I needed to get tickets. I didn’t need to be told twice.

Arriving there it became clear that the Thornbury Theatre wasn’t as accessible as I thought.  The lift was great, there was just another staircase to deal with. Thankfully the MCW staff were well prepared.  They already know me by name and got me up the staircase with a minimum of fuss. Still I wouldn’t be in a hurry to go back there

I won’t write about every match because it will take too long and it’s impossible to remember everything. I think it’s more important to reflect upon the memorable parts of the night. Starting with the MCW Rumble.

I am out of the loop but the unpopular Tommy Hellfire entered the match and basically cleared out everyone.  Going on the reaction Elliot Sexton received the crowd expected him to save the day. In a shocking moment Hellfire sneaks up behind him and eliminates him. Everyone was stunned in what I have already described as Australia’s version of Daniel Bryan’s elimination from this year’s Royal Rumble. Coming to terms with this it would get worse when Hellfire went on to win getting rid of one of my favourites JXT last.

Mostly I had gone to see Chavo Guerrero and his match with Dowie James was a classic.  The action was spectacular.  The crowd was split on who they wanted to win with Dowie getting plenty of chants. To see Chavo do the frog splash was special.  Surprisingly to me Dowie won, although this could be more than useful if he has plans of wrestling outside this country (hopefully I don’t have to beg WWE, ROH etc). Chavo was gracious giving a great speech after the match.  He highlighted the Importance of independent wrestling saying it was the only way to see actual wrestling. I wonder if MCW will get him back.

If this wasn’t enough there was still a main event for the MCW title. The challenger Carlo Cannon comes out and my view prevented me from seeing him receiving his first chair shot. Krackerjak the MCW champion and a personal favourite had struck.  I respect Cannon, I just couldn’t stop the craziness and got more excited with each shot. Finally Krackerjak stopped and entered the ring.  By this stage I am yelling ring the bell, ring the bell looking/praying for the count out. Cannon struggles, stumbles, and after what seemed an eternity it’s ruled a doctors stoppage. A wonderful result even if I was the only one that felt this way.

Krackerjak is unpredictable so I should have known the night wasn’t over. Feeling he could take anyone on he declares an open challenge for the MCW title. Sexton’s music hits, he comes out and wins the title in ridiculously short time. Talk about an emotional roller coaster this was the result everyone wanted and I was absolutely elated. Possibly part of this is because my dream of being Krackerjak’s manager lives on.  He genuinely needs guidance.

I caught up with Grant afterwards, which will be a moment we will never forget. We both could hardly speak knowing we had witnessed something unforgettable. To top the night off Grant insisted I get my photo taken with Sexton. While that was happening I thought I was being clever saying this was the first time I had him without a shirt. Without hesitation Sexton said that it would be the last time, a great comeback.

Now someone may have started this but I want to begin the campaign for JXT to be the first MCW Inter Commonwealth champion. Let’s make this a reality (Grant start making the banner now).

For more information about MCW go to http://melbournecitywrestling.com.au

Ace Frehley Live At The Forum Theatre

I really am a KISS diehard. I have seen them a number of times, even going to a stack of gigs that feature current or previous members of the band. I have lost count of the times I have seen Bruce Kulick, then there was Paul Stanley, even Eric Singer. On this night however it was Ace Frehley who I was seeing for the second time. Given that he was incredible last time, that his latest album Space Invader was awesome and that he was playing at the Forum it promised to be a memorable gig.

After some initial concerns (traffic, queue to get in, the usual) I did arrive in plenty of time. As is often the case there was nothing to worry about because the support was mostly forgettable. At least I did have time to relax and take in my surroundings. The Forum really is one of the nicest venues in Melbourne.

It wasn’t long into his set that I was relieved that I was seeing Ace again. He played songs that would have satisfied most fans. Plenty of KISS with Rocket Ride and King of the Night Time World being standouts. A real surprise was Ace’s drummer who sang a number of songs including a killer version of Love Gun. He almost stole the show. There were 3 songs from Space Invader, which was disappointing because I would have liked to hear more from it. For song of the night I couldn’t go past Rock Soldiers. It is as perfect as Ace gets and I acted like I had never heard it before, always a sign I am enjoying myself way too much.

It all came to an end with Detroit Rock City and Deuce. Some would say too predictable, by that stage I was too captivated to care.

I often forget that Ace was my favourite member of KISS. He is naturally entertaining and always keeps it about Rock N Roll. Hopefully he keeps recording albums and touring here.

Set list

Fractured Mirror
Rocket Ride
Gimme a Feelin'
Toys
Parasite
Snowblind
Love Gun
Breakout
Space Invader
King of the Night Time World
Strutter
2000 Man
Rock Soldiers
Bass Solo
Strange Ways
Talk to Me
New York Groove
2 Young 2 Die
Shock Me
Guitar Solo
Rip It Out

Encore

Detroit Rock City
Deuce