Oct 2019 Stuff.co.nz
Ricky McLeod was too embarrassed to tell anyone he was deaf until 10 years ago
He would chase his nine siblings around the barren slopes of Raetihi, and spend hours holding a spotlight for his father as he tinkered under cars. His childhood no different to any other kid in the remote central North Island heartland, or so Ricky McLeod thought. He never understood why others made fun of him. He got his first inkling when he was at Ruapehu College. The class began like any other, until he noticed suddenly there was silence and everyone was staring at him.
"Why didn't you answer my question?" asked the teacher, with a smirk, as if he had caught the boy out napping. But McLeod hadn't heard any question. He moved himself to the front row, fearing his affliction had just been outed to his schoolmates. But he said nothing. If he didn't acknowledge classmates when they called out in the corridor, he was berated for being rude. When he missed an answer in class, they told him he was an idiot. He still said nothing.
It would be another 25 years until he finally confided in someone that he was profoundly deaf.
McLeod spends most of his days in the safety of a secluded warehouse stripping cars for scrap metal
McLeod, 52, suffers from conductive hearing loss, which occurs when sound is not conducted efficiently through the outer-ear canal to the eardrum and the tiny bones, called ossicles, of the middle ear. He hears only muffled sounds and communicates by reading lips, speaking and sending text messages. He has never learnt Sign Language. McLeod was put on a waiting list for cochlear implants in 2015, and unless the public purse can write a bigger cheque, he will never hear again.
Days are spent alone in a secluded warehouse, stripping cars for scrap metal, a place he knows is sheltered from the bigotry of others and where he won't have to socialise, to pretend to hear.
He makes a modest income, but it's his space and no-one can make him feel inferior. He makes the rules, albeit for a solitary game. "It's been a mission. Lonely, frustrating ... those words say it all." But McLeod doesn't want pity. He's not starting a Givealittle page, and he's not campaigning for a cochlear implant for himself. He'd rather it go to someone else. Someone younger.
But he does want to show what a life of segregation looks like, and what children with hearing impairments are at risk of enduring into adulthood, if they, too, fall through the cracks.
McLeod's warehouse is a solitary place where he knows is safe from the outside world
A survey by an international deaf support website, Hear-it, found 28 per cent of those with hearing loss choose to keep their impairment to themselves. They fear prejudice and misconceptions, assumptions they are "less intelligent" or "mentally ill", or "they only hear what they want to hear".
McLeod is a loner but he is no stranger in Raetihi. The locals know him well. Most of them leave their old cars at his warehouse which he will either fix or strip for parts.
He has limited contact with anyone, except one friend, Sandy Brett, who makes phone calls and communicates for him when needed. She says it's a basic human right for people to feel like they belong in society and they shouldn't be ashamed or hide who they are. She dreams of the day she can call out "Ricky", and not have to throw a stone to catch his attention. At times, she fears for her friend's safety and, in such a small town, she says it is only going to get harder as he gets older. "He can't hear alarms going off in his own house. I've scaled the gate of his house when he's not answered my texts, thinking something has happened to him. People like Ricky deserve to hear. He is a good man and I've seen him struggle. I want Ricky to be able to hear."
A rural town with a population of 1000 people, Raetihi was a minor industrial hub until the 1950s. McLeod recalls it becoming the focal point for travellers going between Whanganui and Waiouru. The treacherous 90-kilometre drive to Whanganui was not for the faint-hearted and was infamous for its primitive tracks and long falls if you strayed from the road. Due to its close proximity to Mount Ruapehu and popular ski-fields, Raetihi is kept alive by tourism, with several accommodation providers and cafes to cater for the swelling number of visitors. There is a school, museum and a handful of shops. "It's nice and quiet. It's home and everyone knows me."
He is often seen with his head buried in a broken down car on the side of the road or fixing someone's flat tyre. His love of cars developed almost before he could walk, ever since he held the torch for his partially blind father who fiddled about in the garage for hours on end. "After four or five years I told him: 'Move over and let me do it'. Ever since then, he trusted me to fix his car."
Sandy Brett is one of McLeod's few friends
But McLeod's dream of becoming a qualified mechanic was crushed when health and safety regulations ruled those with hearing impairments were a risk to themselves and others. Work and Income New Zealand set him up with the odd job, but he would often misinterpret instructions and make mistakes. Workmates would call him an idiot. Next thing, he was out of a job. It became a cycle. "I used to get quite angry. It was frustrating. I never told anyone I was deaf and that was the problem. I was too embarrassed. I was afraid they would all talk behind my back and I just couldn't handle that anymore."
He feared he wouldn't be employable and that others wouldn't accept him. McLeod reflects on a night at the pub, drinking with a small group of friends when he momentarily looked away. As he turned back, the group erupted into laughter but he had already missed the joke. "I hate that. They're all having fun and I'm left out. I don't want to give them a false laugh." Once left out, he finds it difficult to catch up to the conversation. He tries to say something relevant, but it's greeted with his old foe. Silence. "I just left it at that. I felt a bit bummed out. I just don't go out drinking with my mates much now."
What we take for granted is also a common problem for those with hearing difficulties. While McLeod can read lips, people often forget they must face him directly and speak slowly otherwise he is unable make out what is said. Some turn away, cover their mouths or look at others while they are talking. They know he's deaf, but they just forget. "I can't hear them, because I can't read them. It's only natural because you're used to hearing and having conversations with everyone – three or four at the same time – but I can't. I can only have one conversation, one-on-one."
For years McLeod relied on his primary school sweetheart, Julie, to guide him through interactions, appointments and take phone calls. But their relationship came to a tragic end when, in September, 2006, the mother of his five children died after a motorbike crash on State Highway 49 that McLeod was found criminally responsible for. They had been at the Cold Kiwi motorcycle rally on a farm at Tangiwai and opted to return to Raetihi when the band shut down for the night.
McLeod lost control of his home-built tricycle and went off the road. His partner was thrown from the pillion seat and suffered serious chest injuries from which she later died. McLeod later pleaded guilty to careless driving causing death and driving with excess blood alcohol.
McLeod didn't want to talk about the conviction, only heartache, which stayed with him for years. Without Julie, he was exposed to the frightening prospect of navigating the world by himself again.
"She was my soul mate. We were together for 24 years. She helped me out. She did everything for me. I gave up on everything [after her death]. It was very hard and I missed her a lot, but I survived with a few tears here and there. I try to adapt and I've survived this long."
Although he now accepts his situation, he still feels ostracised. He has been fired from jobs, called an idiot and lost close friends. But the emotional hurt of enduring that has always been easier than admitting he was broken or different. Cochlear implants would restore his hearing and solve all his troubles. Once implanted, a cochlear bypasses the normal acoustic hearing process, instead replacing it with electric signals which stimulate the auditory nerve. With training, the brain learns to interpret those signals as sound and speech. McLeod allows the idea to linger, the dreams of walking into the Ohakune Club on Wednesday night and being able to laugh with his mates, to line up a ball on the pool table and still stay in the conversation - to steer clear of the silence.
"It would be something new. It would be wonderful to hear someone say hello behind me and for me to turn around and say hello back. I'd love to do that instead of walking away from them and being called an idiot."
McLeod could hear birds sing and people call his name. He could go to the pub and not offer fake laughter at jokes that passed him by. He could watch television without subtitles, and perhaps even fulfil his childhood dream of becoming a qualified mechanic. He could live like the rest of us.
There are just 40 publicly-funded cochlear implant surgeries performed each year, and even fewer surgeries are done privately, with each costing $50,000. But McLeod's friends say budgets and numbers shouldn't overshadow the human cost.
McLeod has trialled seven different hearing aids, each at $700, without success.
His friends believe service provision for deaf people must prioritise their human value as a precursor to bottom lines and budgets.
Deaf people deserve services because of their rights as people and because societies ought to strive for humanistic values in attending to people's needs.
It is an idealistic suggestion – some would say lofty – but it is not an impossible one.
Southern Cochlear Implant Programme general manager Neil Heslop receives more than 200 referrals each year
Southern Cochlear Implant Programme general manager Neil Heslop says communication through spoken language is fundamental to connecting with family, education and quality healthcare.
The registered charity is funded by the Ministry of Health to perform surgeries and all post-implant care and receives more than 200 referrals each year. But only 5 per cent are accepted onto the surgical waiting list.
It is important the programme advocates for people who are profoundly deaf as they are unable to pick up the phone or sit with politicians themselves. "Ricky is a perfect candidate for a cochlear implant. It is a treatment of last resort for these people," says Heslop. "They're at a stage where a hearing aid is no longer working for them and it becomes like a spiral of despair. You can see why people become chronically depressed."
Associate professor Patrick Dawes, who is also the president of New Zealand Society of Otolaryngology, says the existing funding model condemns most deaf adults to a life without hearing. He wrote a letter to Health Minister David Clarke earlier this year stating an urgent review is needed. "There is an immediate need for funding to address the backlog," says Dawes.
Meanwhile, people like McLeod remain in limbo. Sandy Brett travelled with McLeod to Christchurch when he underwent tests four years ago to determine whether he was eligible for a cochlear, and she vows to one day return with him when a device is made available to him.
Until that day comes, she'll keep fighting for him.