Teen making Waves
By: Brigid Lynch – The Northern Advocate – 17.06.2006
At the tender age of 19, Ashley Worthy has his own caravan, cat, flat and radio station. Not bad for a legless lad from Waipu.
Ashley is used to explaining his fused fingers, skin that looks like it’s been roasted, and skinny, bandaged limbs: “The glue that holds my skin on is missing”.
He has the severest form of epidermolysis bullosa, known as EB, which means he lacks the fibres that connect his skin to the rest of his body. His lower legs, blistered and scarred, were amputated so he could learn to drive.
There are five young people with a similar severity of EB in New Zealand.
They get wrapped from head to toe with protective sterile bandages, changed daily after a soak bath. Helped by a caregiver, it’s a routine that takes Ashley up to three hours every day.
But he’s no whinger.
“I’ve lived with it all my life. It hasn’t really limited anything,” he said.
“I’ve had stink days, but it’s no different to anyone else.”
It helps to live in a small, accepting community such as Waipu, and it helps to have an interesting job.
Ashley’s low-power FM station Radio Waves broadcasts from a squat, Kermit-green caravan on his parents’ property at Waipu.
“This is where we fiddle and swear when things don’t work, and throw on a CD,” he says.
It’s cosy, in a No.8-wire kind of way. Shelves knocked up by Ashley’s builder dad ache with the weight of hundreds of records, a fraction of the six trailer-loads he inherited from the last Waipu radio fanatics.
Radio Waves has been up and running on 99.1 FM for around six weeks. He’s doing it on the cheap and for the fun of it. At first, the air was thick with the sound of Vera Lynn et al, but Ashley has settled into a melting pot of tunes from the 1950s to 1990s. He doesn’t have any favourites.
“I enjoy the music I play on here. I have to, coz otherwise I’d go insane.”
He plods away, cataloguing and uploading songs onto computer. So far the tally is 14 days of continuous music, or 7000-odd tracks, but he’s always on the prowl for more music: “There’s no `obsolete’ around here – we’ll take everything we can get.”
There are still a few technical bugs to be ironed out and, at the moment, he’s just trying to get on air and stay on air.
He says it’s getting better each day, and he is pumping through more community notices and events. It’s that local focus that makes small stations work, says Paul Burton, who started Radio Waves’ predecessor.
“It’s important, because anybody can come and say there’s a meeting at the town hall or a do on at the primary school, so it really is about community.”
Paul and wife Robin set up Waipu’s Juke Box Radio in 2002 because there weren’t any stations playing their kind of tunes. Their record collection swelled as listeners sent in old LPs and 78s, some tacky with strawberry jam.
“It started on the kitchen table with a transmitter and a CD player. Then it just snowballed,” said Paul.
They helped Ashley take over the frequency when they left Waipu 18 months ago. Now they live in Taipa, broadcasting Empire Radio on 88.4 and 106.7 FM, and are planning a move to a 1000-watt station in Wellsford.
Waipu wasn’t a money-spinner, but it was good fun and a chance to help others. When a local lass needed radio experience to apply for broadcasting school, she came to Juke Box. Now she works for one of Auckland’s biggest commercial stations.
“We had two rules: no rap and no swearing,” said Paul.
Ashley and a few mates came from school to help out on Wednesday afternoons, and Paul says Ashley took to it “like a duck to water”. When the Burtons left, they sold Ashley some of their surplus equipment, gave him a stack of records and helped him with radio-spectrum red tape.
Now there are even a couple of guest DJs on Radio Waves, including Andy Saunders (the Saturday night guy) who has his own small station in a shed in Maungaturoto. They swap things and thoughts.
Andy, a 48-year-old truck driver who’s off work after a back operation, has been running `The Shed FM’ at 107.7 FM for a few months.
“Hopefully there’s people out there listening to what I play,” he said.
Setting up has been challenging – “Well, where do you start? Getting a computer that’ll play 24 hours a day and not pack up!”
Now he has a souped-up machine holding five days of continuous music. Most of it is from his own CDs, the rest is “bludged”. He’s hoping to get sports clubs and other not-for-profit groups on board to advertise, to help pay engineering and licensing costs. The Australasian Performing Rights Association charges around $200 a year to low-power stations to allow them to broadcast copyright music.
There are hundreds such stations around the country, set up on the cheap, from a love of music, or just by accident.
“I had no idea what I was doing when I left school and now I’m running a radio station. I take each day as it comes,” said Ashley.
He has a tight band of mates, most of whom work in the food world so they’re never short of a decent feed. They hang out, watch videos, and head to Ashley’s for a cook-up.
Ashley’s plucky. He’s been skiing with his EB nurse, also a ski medic. He got his licence the day of his birthday, and learning to drive motivated him to get his lower legs amputated.
Living in a new, self-contained flat next to his parents, he is learning what it’s like to have to buy his own cat food and be a bit broke most of the time.
“It’s called life,” says his mum. Ashley just chuckles.
A RAW DEAL
Epidermolysis bullosa, known as EB, is the name of a group of genetic, non-contagious disorders causing blistering and shearing of the skin from even gentle friction.
A handful of young Kiwis have severe dystrophic EB such as Ashley. For those with severe simplex EB, heat makes the blistering worse, so thick padded bandages are not an option for protecting them from the knocks and bumps that cause big blisters.