It was recommended I watch a movie the other day on Disney, “Out of My Mind”.

A story about a non-verbal girl with cerebral palsy and her family navigating the system, that we with a disability are all too familiar with. A movie I really enjoyed but will reserve my opinions and review for another day. This movie had so many one-liners and the title of this blog stuck out as my favourite. It resonated with me for many reasons as sometimes having a disability one perception is we must be grateful for everything and everyone who enters our paths. While I am grateful for the many people that are in my life, I am also thankful I am me and have the freedom to be myself. I am grateful that I am supported to be myself and make my own decisions for my life.

I am blessed to have some amazing people in my life, and I love them very much. However, it doesn't mean that I am their little puppet that needs to kiss their butt. I do have a physical disability and require help for many things in my life, but this does not have to be my expense or losing control. My autonomy must and will be always respected. This is the reason that I can advance and move on with my life outside of what having a disability means or is perceived by the wider community. I recall as a child there were many things I needed due to my disability. To start I needed an electric wheelchair and the station wagon to transport that chair, without this, my mobility would have been restricted. As I am also non-verbal, I also required (and still do) adaptive equipment to communicate in what is essentially a verbal world in which I live. Now to get these things many years ago, my family and friends were the ones who essentially had to step up and fundraise for this to happen. Sure, there was the odd grant here and there but, in those days, one had to sell one’s soul in order to get what was needed. This was the day and age where we all had to play our part to become the “poster child” of a service or local community charity to get the funds required. There were the national telethons disability services that required you to jump through hoops, sell your soul days to the media and more. We essentially did what we had to do and in hindsight, we had to kiss some A$% to get what we needed. However, ask any one of these former child poster kids they will tell you once you have lost that cute child marketability the fundraising becomes a lot harder”.

Fast forward to where we are now in the disability field. Thankfully in Australia, we have moved on to a system that is an insurance model. On paper, the model promotes that if you have a disability (and require things or assistance due to your disability) and it is reasonable and necessary, then our country sees value in providing that for you to ensure you can live a life of purpose and value. So, we have now moved away from the charity model to a social/ business model. A model that when a person with a disability is supported correctly should be free to partake in all walks of life and communities of their choosing.  Alongside this social model, our system allows for people who support those with a disability to be rightfully paid a liveable and generous wage. It is now so far from a charity model but there are some who are still stuck in that era and may think we have to be eternally grateful for any assistance they may offer. Unfortunately, there are still people who are entering this career with the mindset that the person with the disability must take a back seat to what kinds of support they may receive.

I am a person with my own view of life!   am blessed to have a few great people in my life however, I had the odd bad egg. The other day I had this experience with a new support worker. On paper, she sounded great. She was studying to be an occupational therapist and she was of a similar age to me.  I thought it was a great sign, so we caught up one morning. Our meet-up went well with good conversation and we both agreed on doing one day a week. It was an easy 3 - 4-hour shift on a Wednesday where we would go food shopping, cook a meal for dinner and then clean up. The basic tasks I require to live and without any personal care. From day one the flags were clear. She started telling me what she would and wouldn’t do, engaging more on her phone than with me, not facilitating conversations when we were in public and more.  I persisted though as I thought she would work it out after a few weeks. Oh, I was wrong and each week there was another thing. Messaging telling me she wasn’t coming at the agreed time, not wanting to clean or something else.  When I attempted to question her, she would make me feel as if I had to be thankful, she was turning up at all. When I asked her to do some very simple cooking task she refused and did it her way then proceeded to spend time on her phone. It was awkward and I called her out on it, and she literally walked out with food still in the oven, mid-shift. I share that negative situation as it highlighted two things that I learned from this situation: 

1.             Expect staff to do agreed duties for agreed wage - The expectation that due to my disability some may still look at me as being an “easy shift” and I must do as they wish. I have certain expectations and require things to happen for my house to function. I’m super casual if things are done. I don’t have to feel bad that these things are needed to be done. You are duly compensated for the time you come into my crib to do what needs to be done. People with disabilities are no longer just the charity model we once were. 

2.  I do have choice and control over how I can control over how I see my daily supports. My life is evolving, and I require many people to assist me in getting where I wish to go. If you are not with me, it’s ok however I will request you step aside to allow room for people that wish to be on the journey WITH me. 

I have goals, I have dreams, I have fears in my life, but I also have expectations of my paid supports. This, for the most part, has been amazing with the changes in our disability supports over the years and I truly am grateful. My disability has always been a part of my identity. Not the entire identity just a significant part. It is what it is, but life goes on.  I have a disability and had to play the game back in the day in order to have my needs fulfilled. I no longer live my life in that charity mode. I have disability however I will not kiss ass or allow people to control my life just because I need support in many ways. My mother taught me to always be in the driver’s seat of my life and I will be assertive and express my autonomy how I see fit. This does not have to be seen as a negative or angry position to be in but one of self-empowerment and direction.  I am blessed my friends, family and supports encourage me to be this person. I am grateful this situation with the new worker was short-lived and was quickly shut down. I am equally grateful that this is not reflective in anyway with any of my other support staff. I encourage my fellow disabled community members who require supports to be clear in their directions, right down some kick-ass goals for 2025 and build a team of legends that will assist you in getting there. 

Make 2025 yours and go kick some ass and not kiss it!!!

About the Author: 

Marlena Katene is Australia’s most unique entertainment journalist. Having Cerebral Palsy Marlena communicates via an ABC Board and iPad. After completing her Bachelor of Communications degree Marlena has been blessed to interview a wide range of people ranging from Ed Sheeran, Robbie Williams and even the Dalia Lama. While her journalism focuses mainly on music she also has written on other issues and freelance writes for a variety of magazines. Apart from her journalism work, Marlena is an avid traveller and adventure seeker. In 2016 she became the first person in the world with Cerebral Palsy to Base jump, achieving this feat by jumping off the 421 metre KL Tower in Malaysia. Addicted to travelling she is always seeking the next adventure and place to explore. You can find Marlena on Instagram as @marlena_katene