With 2024 coming to a close, it is the time where I do my routine “look back and reflect on the year that has been”. And it has been A YEAR!
At the start of this year, I found a community with which I shared the same core values and was able to freely and authentically express my passions. I have moved through many different circles in my life, but this year I felt truly comfortable and accepted by one. I was not solely seen as someone with a disability, rather I was acknowledged as a full and complex person – like the rest of the group – as people took the time to get to know me personally. However, I was not able to sustain a connection to this group for very long due to tension and internal conflict that often occurred amongst the members. This caused a lot of stress for me that I did not have capacity to deal with. I hate conflict. It was also hard for me to comprehend why it was even happening, as we were all, or so I thought, working toward a common goal. And so, even though it did not end well, this community showed me that I can find a group that I can truly be a part of.
In the middle of the year, I had my world spun by the death of my close family friend, Rob. He lost his short battle with cancer on the 6th August, leaving behind his wife, daughters, family and friends who loved him immensely. My family and I have felt his absence ever since. He had known me my whole life and was an integral part of my life; an uncle to me, though not by blood. Rob always provided guidance when I needed or advice as requested and he always protected my confidentiality, never telling my parents about what I entrusted him with. He was a typical ‘bloke’ but after having his two daughters became the most in demand netball coach in his spare time, with all the local clubs fighting for his leadership. He was also a cabinet maker by trade. Whenever I asked him to make me something – no matter how obscure or annoying the request – he would take the time to do it for me. In support of my passion for poker, he even made me a custom card box so that I could view the cards that I was dealt, without flashing them to my opponents. I named it ‘The Poker Peeper’. I miss him dearly.
One significant challenge that I have faced during this year, is the change in my support team. In all honesty, this has been the hardest year for it. From the start, a few of my regular workers left and others reduced their hours. It was difficult to find people who had similar values to me, to replace the workers that had left. At the time I did not realise how fortunate I was, to have had a stable team for the past couple of years and they were the best group of workers I ever had. I have lost count of how many people I have trialled this year. Over the last couple of months I have finally been able to establish a secure roster and I am starting to regain my confidence in the support that I have.
In late 2023 I made the decision to relaunch my business as I felt like I was in a better position to be able to help people again, but it needed a rebrand before doing so, which became a huge focus for me this year. I grossly underestimated the work of rebranding, thinking it would be done within a couple of months. I was very wrong. Weekly difficulties in the website creation would ensue, strategising and copywriting was a substantial task because I wanted new content, and technical issues arose that I was unable to fix, despite having built four other websites. My graphic designer friend who was also assisting me, had to suddenly stop working on my project due to personal reasons. A year of very slow progress passed by when I finally decided to outsource the work to a private company. Three months later, in November, the website finally went live! The efforts to get there took a huge toll on me, but I am so pleased with the results.
New website, new me. While strategising for this rebrand, I pondered a lot on what content was important for me to share with everyone. I decided that anything that I did post was going to be raw and authentic. Historically when I had considered doing this, I was inhibited by the concern of offending people. Now I recognise how important it is for people who are not generally heard, to BE heard in an oppressive, ableist society. I pride myself on being a genuine person, so my brand was going to reflect that.
In 2024, I started giving presentations again. The key talks that I delivered were ‘How to hire your own support workers’, ‘How I communicate’ and ‘Sexuality and disability’. Whilst being confident in my content, I was admittedly very nervous to discuss sex to a crowd of strangers but to my surprise I received the best feedback of my career thus far. This experience made it clear to me that people do want more discourse on these kinds of topics but there are not enough opportunities to present them and there are not enough people who feel comfortable delivering them. On my website, I have created a second blog called ‘Sexy Sunday Nights’ (SSN), where I discuss sexuality for people with disability. I am hoping that by publishing more of this content, I can contribute to normalising the discussion around this “taboo” topic.
My business goals for next year include growing the presentation offering of my business as well as offer mentorship to young people, especially those with Cerebral Palsy. I have gained so much valuable life experience navigating the world as I have, and I want to be able to share this with other people who have similar identities and experiences to me. I wish that I had received this guidance in my life thus my intentions are to hopefully ease any challenges for others using my experiences.
This year I co-created a micro credential course called ‘Introduction to the good steps of assistive technology provision’. This was done in conjunction with OT Libby Callaway from the Australian Rehabilitation & Assistive Technology Association (ARATA) and Reality Learning. It is a two hour course on how to choose the right assistive technology products for a person with disability. This course is designed for people with disability support workers, allied health professionals and assistive technology suppliers. We are hoping to create more comprehensive courses on this subject, in the future.
I also recently accepted a position on the innovation council at Summer Foundation and in January next year, I have another interview for the advisory panel at Cerebral Palsy Australia. I am highly anticipating what will result from these positions and hopeful that good things will come from them.
The last month or two have been incredibly life changing for me on a personal front. I am not ready to disclose what has been happening, but it has been both overwhelming and exciting to say the least. Before I begin to share anything, there are a few more corners to turn in this particular journey, but stay tuned.
Bring on 2025!