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.