Image: Eleanor Hurton and Paige Sullivan
The National Foundation for Deaf & Hard of Hearing describes Auditory Processing Disorder (APD) also known as central deafness as:
“a hearing disorder that affects how the brain processes speech. Unlike deafness or blindness, a brain processing disorder is a hard concept to grasp, and the condition can be easily missed.
While the ear ‘hears’ sound normally, people with APD find it difficult to process sounds and to understand what they have heard.”
I was diagnosed with APD in 2017 in the last year of my undergraduate studies at the University of Canterbury. I had been struggling with my hearing since the start of university, and despite numerous hearing tests in the year before then, a cause had not been found. It was only after I pushed to be referred to specialist services that a diagnosis was finally made.
After 3 years of struggling with no idea of what was happening to me, finally being able to pinpoint the cause of the distress I had been feeling was an immense relief to me and I broke down when the specialist told me the results.
It suddenly made sense why I had a hard time hanging out with friends, participating in discussions during lectures and getting by day to day when listening was required. My struggles were no longer “in my head” and I had an explanation that I could learn about and understand.
For a while after my diagnosis I thought my hearing disorder was the worst part of me – that it was something to hide from people, and be ashamed of. I was worried I would never get a job if I disclosed my disability, that I would be treated differently by university staff, and rejected by my friends and those I met.
I was filled with self-hatred and was angry that I couldn’t “just hear” like everyone else. It took me a long time to come to terms with my APD diagnosis.
I remember in my honours' year at university in one of my courses I was tasked with creating the plans for a project of my choosing. I decided to create a project to benefit young people with disabilities, and I am particularly grateful to Karen Saunders from the University of Canterbury English Department for supporting me with this.
I made the decision that from that day on I wanted to do my very best to make sure that not even one young person with a disability would feel like they had to hide their truth.
I wanted to be able to support these young people to see that they had worth and so much to offer this world.
From this assessment the idea of ReDefine: Youth Development Programme was born. ReDefine aims to redefine what it means to be a young person with a disability and empower these young people to take on a positive identity and see their value not despite disability but with disability.
I am on the Management Team of Youth Voice Canterbury (YVC). YVC is a youth led community organisation that aims to connect young people, develop the youth voice and champion youth participation. The YVC network includes youth participation groups, youth councils and advisory groups, clubs and organisations that are youth led. We also offer membership to individual young people who want to get involved.
I pitched launching this programme through YVC to the rest of the team, and I applied for funding from the Ministry of Youth Development (MYD), and was thrilled when we received some funding for this initiative for 2019.
YVC officially launched ReDefine at our annual South Island Youth Connect this year, a multi-day event to upskill youth-led groups in our network. The Management Team asked me to present ReDefine during an inspiring speakers panel at this event. At first I felt anxious about doing this as I didn’t feel like an inspiration, and I felt out of my depth next to other speakers who had been doing amazing things for years.
When I was speaking I shared a little of my story and how ReDefine had come about. I was surprised when I looked up at the end of my talk to see that many young people were moved to tears.
One young woman threw her arms around me and told me that she also had APD and was so grateful to meet me and hear about my journey – that my hope for the future and strength gave her courage to keep going. A handful of other young people approached me throughout the event and shared their own disability stories and laughed, talked and cried with me. This experience was one of the biggest privileges of my life. To be able to support young people with disabilities and speak hope and life into their worlds meant everything to me.
I am on a journey of leadership in the disability space and I mean to take that responsibility seriously, and do all I can to give my community a voice and a real say in the decisions that impact on our lives.
I am so excited to be the Project Manager of our first ReDefine Hui coming up 31st August – 1st September 2019 in Christchurch. This is our first major ReDefine event, and I am so proud of all the work my ReDefiners team, and our ReDefine Advisory Group have put into this hui so far.
I especially want to give a shout out to Paige Sullivan, who is on the YVC Management Team and has been one of my closest friends for the last 2 years, for her endless support and love during this journey. Thank you for believing in me, and always being quick to learn and apologise when you makes mistakes.
I know I am not a perfect person and I am going to make mistakes along the way, but I am committed to doing all I can to advocate for the young people in my community and I am excited to see what the future has in store.
For so long I thought my hearing disorder was my greatest flaw, but now I see that APD is my greatest strength. APD shapes the way I see the world, and is the reason I am so compassionate towards others and passionate about advocating for equal access to opportunities for all people regardless of their background.
APD is a part of who I am and I am so PROUD of that. I am me with my disability not despite it – and that is pretty great!
If you want get in touch and talk more about my journey or ReDefine feel free to email me at: [email protected]