I remember being on the first season of Who Care’s Stare. It was on What Now when I was about 9 or 10. That was over 10 years ago!
I’m not sure if kids watch a lot of TV these days but when I was younger waking up super early on Sunday mornings was such a ritual for me. I’d be calling What Now all morning just to hear my voice on TV. So finding out I’d get to have a whole section about me was a MASSIVE deal.
When you’re a kid everything seems just a little more magical. I clearly remember how excited I was to be dressed up and wearing a microphone, the camera crew made jokes about me being famous. It made me feel very special; it made it easy to talk to her about my disability.
Being on the show as a kid had a positive impact on my confidence. As a kid with a disability it made me feel like someone worth being filmed because you don’t see many kids with wheelchairs on TV. It also gave me the confidence to talk about having a disability without being shy or dismissive when all you want to do is be the same as anyone else.
I’m now a third-year university student studying Ecology and Conservation Biology (and I work at Attitude in my spare time). Over the summer I had the incredible opportunity to present the latest season, now available on TVNZ’s HEIHEI.
I met 11 different kiwi kids with a variety of different disabilities. I really believe being on different shows as a kid gave me some insight into how these kids may want their own disability to be addressed. A question I would often get as a kid was “Is it hard to be in a wheelchair?” which is extremely confusing. What is it being compared to? My life IS being in a wheelchair, is my life “hard”? It was not an appropriate way to talk about disability. Especially as a kid still forming my own identity with a disability.
It’s not about being precise, but just mindful and empathetic. Overall with all the kids, I was surprised by how relatable they all were. The way they expressed their own differences in such a concise way while still being a goofy kid was amazing.
I met with Benjiro who has Cerebral Palsy for the first shoot. He was shy at first, but once we started talking about his music, he quickly came out of his shell. Once quiet Benjiro was now screaming AC/DC with Netti our director. I really felt out of my league. As my first time presenting, I was nervous, but it soon just felt like hanging out with an adorable kid.
Next was Pierte. She was born with one arm. Pierte was a little older and seemed very in tune with her disability. She was confident and didn’t hesitate to show us how she accomplished different jobs with only one arm. Her favourite thing to do was build LEGO sets, which I initially thought would be incompatible with her disability. Pierte proved me wrong and showed me how she adapted using tools to do the things we think you can only do with two arms.
Tino and Gabe were next, and their disabilities happened to be very poetic. Tino and Gabe are best friends that have Hemiplegia on the opposite sides of their body. Tino was a little shyer than Gabe who was cracking jokes as soon as I met them. It was awesome to see how close they were. Gabe was also very cheeky and ended up soaking me in water in our prank section of the show.
I wasn’t ready for Oskar. Oskar is a 6-year-old kiwi kid with Achondroplasia. He also happened to be the cutest kid I’ve ever met. I remember we couldn’t stop him showing off his toys because he was so enthusiastic. We got to play dress up together and with his natural charisma, he really didn’t let me forget that I was NOT the star of the show.
Next, we caught up with Harper who is 9 and unfortunately acquired her disability after an accident a couple of years back. I wanted to be compassionate and make sure I didn’t say anything that would make her uncomfortable. To my surprise she had an incredible humour about it all. She was confident and was the first kid to ask me hard questions about my own disability.
We filmed Zenos next. He is deaf and has a cochlear implant. Hanging out with Zenos was really fun. We had a translator from the deaf school come and help us chat. I don’t relate to this disability as much as some of the other physical disabilities so I learnt a lot. Zenos taught me how to sign my name! He was a really funny kid even showing us how he could stick a spoon to the side of his head where the implant was.
We also filmed Jade, who was born with Cerebral Palsy. Jade was really awesome to talk to. I remember how giggly she was, and she probably got me with the best prank. I totally did not see it coming and she couldn’t stop laughing.
One of my favourite episodes to do was Ariki’s. Ariki was born with Ectrodactylism and we got to drive up and stay in Kaitaia to film him. Ariki is an extremely active kid who spends most of his time outdoors. This meant we got to go to the beach, the skate park, and a local river. Ariki was quick to teach me the ways of the outdoors and I had a lot of fun with him.
Next was Iziyah. Iziyah was born with Chronic Granulomatous. One of the problems is that he’s vulnerable to infections, and I had to sanitise my hands before I met him. Ironically Iziyah was the most affectionate, cuddly kid I met. He also spoke about himself and his differences with self-awareness I wasn’t prepared for. I really enjoyed our chat about how we both feel different and how our disabilities affect us.
Last but not least I met Effie, who is deaf. Effie had cochlear implants in both ears. I thought it was really stylish how she’d incorporate her implants into the way she did her hair. Effie taught me how she adapts in classrooms with many kids with a device she uses to hear the teacher clearly.
I’ve really learnt a lot from this experience and I’m so glad to be engaged in something positive for the disabled community. Talking to these kids the way I wished people had talked to me was empowering. I really hope the kids gained something positive from sharing their stories with us too.