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.