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.

International Day of People with Disability – What it means to me?

In 1992, the United Nations proclaimed the 3^rd of December as the International Day of People with Disability. According to the official website “each year the UN announces a theme. The theme for 2015 is: Inclusion matters: access and empowerment for people of all abilities.

There are also three sub-themes this year:

·      Making cities inclusive and accessible for all

·      Improving disability data and statistics

·      Including persons with invisible disabilities in society and development.

The annual theme provides a frame for considering how people with disability are excluded from society by promoting the removal of all types of barriers; including those relating to the physical environment, information and communications technology (ICT), or attitudinal barriers.”

I could go into a long winded description about what all that means but I won’t. I’ll just say I’m all too aware that terminology in disability is to intellectual. I only wanted to promote what International Day of People with Disability is for 2015. Now I can get onto my perspective on the day.

For years not only did I pretend I also wished it didn’t exist. When disability is in the public eye it is difficult not to feel it’s more to make able bodied people feel better about themselves. In recent years though I have become more accepting of the day. After all my journalism training did teach me any publicity is good publicity. And generally on International Day of People with Disability the focus is not on the struggle. I know when I think of the day I don’t want to hear any negativity.

Given this I decided to dedicate this blog to something very personal. That being how I feel about being a quadriplegic. Many people believe that I am doing well with what I’ve got but my life is of less quality. When faced with this situation the same question echoes through my head. Where am I going wrong?

At these times I wish I had my mate Michael with me. He would be an excellent character reference. I can see him saying he was cool with it in high school and he hasn’t changed since. Because he recognised this he made it his mission that I won’t miss out. From insisting I go to the year 10 formal to ensuring I am well fed when I’m at his place, to the humour that is anything but politically correct Michael wouldn’t want me any differently. Nor would his long suffering wife Michelle who always makes me feel I’m part of the family.

When speaking about my disability it usually comes out that I adjusted to life with quadriplegia long ago. The best part is always when I get asked questions. Once people get past how fast is my wheelchair, I usually get asked thought provoking questions. On one occasion I was asked “if I could have one physical ability, what would it be?” I said it would be to transfer myself in and out of my wheelchair.  As I see it this would allow me to schedule my life more easily as I would be less reliant on people. I thought I had answered the question well although I felt it was an obvious response.

The lady I presented with thought otherwise. After everyone left she immediately started teasing me continually saying you’re hopeless. I was enjoying this but I didn’t understand what I had done. She said that it was in reference to how I answered the question. She went on saying “that’s typical of you, giving an answer that is practical to your life. You clearly have accepted your disability because it didn’t even enter your head to say walking.” She said this with such conviction that I consider it one of the best compliments I’ve ever had.

To highlight the point, my disability is ingrained so deeply I can’t visualise not having it. For example I can see people saying surely you would have liked to be a wrestler. I would like to hand Sting his beloved baseball bat to help him win the WWE title but that’s pretty much where it ends. Well I wouldn’t mind being part of a wrestling promotions creative team, I couldn’t do any worse than the WWE. But honestly if it’s a physical impossibility it’s not something I think about.

And I have plenty to reflect on to remind me my life is awesome. Like when I got my photo taken with Hudson Leick (pronounced like) at Comic Con. When meeting her I said that while many would be a fan because of Xena I was different. I said I had been a fan since watching her on the short lived series University Hospital. She was disgusted that I mentioned the show and asked why. She went on saying the show was terrible and that she played the villainess sex pot. I smiled and said I remembered. I proudly told her this meant she wore the best outfits. I then added that I was a teenager when the show was on, which made her appealing. Without saying a word she grabbed my hand and it actually felt like she pulled me close to her. Seeing as how I feel like I get around in a immovable object I found this very memorable. Sadly the photo of us didn’t do this justice. Still I like to think she thought had a little charm.

And while there is the enjoying life whether it be metal, comics or wrestling there is also the ridiculously high standards. One of the highest being that life with disability is not a lesser life. This gives me purpose, something we all need.

And let’s face it a world without disability would be boring. We would all be the same and we don’t want that. If International Day of People with Disability helps people to understand that then we should all get on board,

Of course with it having a festive feel I will wish Dale a happy International Day of People with Disability. He will hate that I mentioned him but he knows where I’m coming from. I’ll also give a shout out to my friend Alisha who is as idealistic as I am. Her excitement about International Day of People with Disability is unsurpassed.  It’s impossible not to think about her on this day as wherever she is, she will be making everyone around her know how great life is. And that’s the real theme of International Day of People with Disability.

Just put it in an email – if only it were that easy

Like it or not the digital age has taken over. Members of my family may be able to cope without adjusting but I can’t live that way. The fact is, it’s here to stay even if it’s left people with disability out in the cold. Particularly those that either can’t or have no interest in using technology.

The toughest barrier in the modern world is that we all expect an immediate response. Whether it be emailing, texting or social media the key to it all is speed. I am well and truly capable of doing all those things but it isn’t the same. I had to let myself off on that sometime ago for my own sanity.  Using Twitter as an example by the time I have contemplated what I will say, most of you would have updated and moved on to your next task. Furthermore businesses have policies that they will respond to emails within 24 hours. From a business perspective this makes perfect sense. The trouble with this though is that many people with disability couldn’t be employed if they had to meet that requirement.

Technology also has and is advancing at a rapid rate. Had people with disability known that touchscreens would have become standard we would have raised our concerns sooner. I consider them to be one of my many enemies. Mentally it’s not a problem, physically it’s just not going to happen. To aggravate the situation I am forced to tell people how to use my iPhone when they don’t know how to. Watching someone struggle with something I  know I could do myself were I able to certainly tests my patience. When I am going through this I usually I have the feeling that I would like to throw the phone away. Having said all that I can’t complain at the moment because I am starting to see improvement.

It began when my wheelchair brother Dale encouraged me to get a newer iPhone. Old friend Peter came through soon after and I became more independent instantly. It wasn’t ideal but I could text and make calls on my own. To make sure I was going to get the best out of the phone I started working with technology guru Jeff Neal.

It is genuinely scary how people with disability are willing to accept less. Not only that we do it on a regular basis. With Jeff I didn’t have to worry about this. We had known each other a while and had some ideas in place. We weren’t sure how we were going to proceed so let it go. A few months ago I decided to move forward with the technology plan. Knowing my plight for the wheelchair was still going to be slow, I didn’t want to wait to get the phone fully operational. This turned out to be a wise decision. I know this because within a short time Jeff has got me a better trackpad and a headset for my mobile.

Most importantly we are working together.  Something I am not accustomed to. Obviously it should be this way, unfortunately it rarely is. Generally the feeling in disability we are working towards the best outcome for everyone except me. Because Jeff and I have the shared goal we have already expanded the original goal. I already have the confidence to explore further what I want, which is exciting and rewarding. It’s certainly a nice difference from the usual mind numbing process with the disappointing ending. And while I am not as close to being organised as I would like I’m actually relaxed. To get the best result is going to take time and that is what we are working towards. Isn't that right Jeff?

It will always take longer for me to email, write documents etc but it’s nice to know I can do it more efficiently. I have more chance keeping up with the world and will be able to perform tasks in a more appropriate timeframe. It’s  equally impressive that getting this done is not going to be a battle. There are people out there who want to and can provide solutions that work.

Once I get my technology sorted, I can then continue with the other obstacles. Trying to get my new wheelchair and arranging my attendant care. And then there is Sting winning the WWE title and getting Saxon to tour Australia.

I am taking it one challenge at a time.

Handicapped, disabled, physically challenged - relax I’m confused too

It was always the plan for me to write about my life at some point. I thought it would be a book that I would release in my 50s. It was only in recent years that I considered a blog. I kept putting it off though. There was plenty of self doubt. If I am to be taken seriously I would need to be open and honest. I don’t really know any other way but would I really be comfortable doing this. I would also need to prepare for criticism, would I be able to handle this. And then there was the biggest fear of all, I would be boring people.

I don’t think I will ever get over all that but the feedback so far has been positive. Seems like people are paying attention because my recent blog The C Word mentioned the E words. I have received encouragement, that has empowered me, now I have to put in the effort. What came out of that blog was that people wanted to know what the appropriate language is when it comes to people with disability. A reasonable question with no reasonable answer.

All that everyone (including people with disability) needs to know is that it’s not black and white. Whenever I am thinking about disability I realise I am such an old man. This is because I can remember a time when I didn’t have to  ease people mind’s about my disability. I am talking about a time when Political Correctness and Occupational Health and Safety didn’t exist. There is no chance I am going to say the world was better before they took over, I am just well aware they have hindered my progression.  Political Correctness means people are even more afraid to talk to me. Occupational Health and Safety prevents almost every disability organisation from doing what is best for people with disability. Hearing words like compliance and legality do nothing for my self esteem, because I am constantly doing my absolute best not to be a liability

To demonstrate why appropriate language is subjective I only need to look at  my father. When talking about me he will calmly say to people it’s a challenge having a severely handicapped son. I enjoy watching the confusion this causes particularly as I don’t pull him up on it. Occasionally some well intentioned therapists and friends want to convince him otherwise and it’s like red to a bull. Politely but firmly he will respond with he’s severely handicapped. Is it outdated language? Absolutely. Does it offend me? Not at all. It is his way of being a protective father. It’s a reminder that I genuinely have high needs and that he knows it better than anyone because he has lived it with me.

Never being subtle he will also proudly tell people how great it is that I am disabled. He will go on to say how it’s given mw all this time to think. And that means I can be relied upon to give good advice.

My mother sees me in a similar light but will forever call me boy. She often says she is child like, something we have in common. One of my most prized possessions is a Super Powers Batman action figure. My mother scoured the city to get me one (and would still take on a mission like this right now) and we both speak about the experience fondly. This is why my hunt for a Super Powers Batmobile goes on.

At All Star Comics Melbourne I feel like I am at home. Always opinionated especially when it comes to Amazing Spiderman comics. Earlier this year they opened their new store and the only fitting description of the evening is sensory overload. I was only there for an hour, but I made sure I enjoyed every minute. As over the top as it sounds I thought life just doesn’t get any better than this. Thinking I was possibly going mad I was relieved when Larry (not content with appearing in Incredible Hulk comics he is now invading my blog) charged over. All he said was “I have to go but seeing this got me hard”. Briefly I was taken aback before reality set in. I had to admit that I was pretty turned on myself. Being more sensitive I later described the event as one of the most romantic moments of my life.

When it comes to my relationship with All Star co owner Mitch I definitely have enough material for a single blog. We both give ourselves a hard time, and often have the same reaction to situations. A moment that springs to mind actually occurred pre All Star.  Years ago Mitch mournfully told me my favourite comic creator Ed Brubaker wasn’t writing Daredevil anymore. I was definitely distraught because I said but that’s been better than his run on Captain America, which I consider blasphemy. This led to us sitting together in complete silence struggling to comprehend this injustice. There have been so many times like this that a standard quote between us is “it’s alright Mitch we will get through this together”.

And then there is the man I now refer to as Anthony 1 (Anthony 2 and I have a G.I. Joe play date coming up but that’s another story). As soon as we are left alone the filter is completely removed. I enjoy our oonversations way too much because I am completely at peace. Anthony is also always looking out for me. If it wasn’t for him I wouldn’t own the Art of He-man and the Masters Of The Universe, which would make me a lesser man. My only concern is that Anthony will grow tired of Mitch’s oppressive management and move on.

In the local metal scene I am known for being obsessive about Iron Maiden and Ripper Owens. Through my many discussions with Gary, I have come to the conclusion that what we don’t talk about isn’t worth talking about. When it comes to Shane, there is no doubt that he is family. We generally see the world in the same way and purely out of circumstance we don’t spend enough time together. I also like to think that he meet his match when it comes to enthusiasm about metal, particularly concerts and gigs.

Lately I have been making in roads in the local wrestling scene through MCW. Last event I had the pleasure of talking to Mr Juicy. He is the self proclaimed face of MCW and is genuinely interested in people. As we talked he said he lacked flexibility. I told him I had the same problem. He looked at me strangely as if he had said the wrong thing. Without hesitation I said “don’t give me that look, you’re always poking fun at yourself”. He simply smiled and later on, he informed me that an important part of his body was small. Needless to say I am looking  forward to our next conversation.

And when it comes to disability I sound like a politician.  Wherever I am when the topic comes up words flow. Sometimes with clarity because I feel I have the experience,  that others don’t. I also try to bring as much humour as I can into disability to keep people guessing. A perfect example of this was when I was with Liz Wright who can take responsibility for this blog. We left a meeting together and she immediately launched into how feel good labels about disability were horrible. I couldn’t resist and said “like what handicapable,” This actually left her speechless and I thought she might throw up she was so disgusted. I couldn’t have been happier with my work.

What gets lost when debating appropriate language is that it’s not fun seeing people overthink what they will say to me next. As you can see I am exposed to all sorts of language from a variety of sources. If I was to get serious and think about what was appropriate I could miss out on some wonderful experiences.

One of the best movies I have seen is Patch Adams. A scene that stands out particularly for this blog is when a doctor is demonstrating a consultation with a patient. After going through it all the doctor asks if there are any questions. Patch responds with what’s the patient’s name?  Sound advice because when meeting new people I start with “I’m Lachlan, it’s nice to meet you”. We can work out the rest in time.

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.