Share Your Story: Hope
Hope lives in Upper Hutt with her parents and twin siblings, and has moderately severe hearing loss in her left ear. She also has constant Tinnitus, which she treats with a hearing aid that plays a sound to counteract it.
She is a confident and eloquent 16-year-old, and from a young age, she has been a focused student. She has big dreams and aspires to be an advocate for those who have faced similar barriers in their lives.
We spoke about her experience at school, both socially and academically, and how hearing loss has affected her daily life.
While her hearing was tested in her early years, her results were not shared with her parents at first because it was assumed she just wasn’t paying attention. The teachers thought that she couldn’t be hard of hearing due to being able to speak well.
Thinking back to her original diagnosis, Hope has some funny memories.
“I remember getting hearing aids when I was five years old. I was scared because I found out that my hearing aids weren’t waterproof. So, for some reason, I thought I couldn't drink water!”
While it was often difficult to get her teachers to accommodate her needs in the classroom, her biggest struggle was connecting with others.
“It’s hard to open yourself up and be vulnerable when you have no idea what's going on,” says Hope.
“It is tough. After I had a big drop in my hearing in 2019, my friends got really mad at me and thought I was ignoring them. I figured out that I just couldn’t hear them.”
While one on one conversations are fine for Hope, in a group of three or more, hearing gets trickier. Hope explains, “In a group of three, I start to feel a bit left out…I just completely miss parts of conversations and I end up looking like an idiot. That has always been quite hard for me.”
In high school, the goal is to blend in at all costs. Hope’s hearing loss makes her different, and this isn’t always easy.
“I attend an all-girls school, and girls can be nasty. They would often just talk behind my back in front of me and I wouldn't understand them.
“There was one girl who started treating me like my disability was mental rather than physical. She would speak slowly like I was a baby and explain things to me that were very obvious, and it frustrated me a bit.
“I find it hard because you can only ask people to repeat themselves so many times before they just kind of give up.”
Although she struggles with these challenges, she is a passionate learner and is supported by her family to achieve to the level they know she is capable of.
“I love to learn. In the academic side of things, I push through any challenges I face,” says Hope.
Hope’s mother Lisa shares, “Some of her teachers didn't fully understand hearing loss. Even though most would think that passing is enough, we knew that Hope was capable of more. As a parent, you know how important education is, and you want to make sure that Hope can get the best education possible.”
High school classes can be exhausting even when you have perfect hearing, but the added strain of struggling to hear uses a huge amount of energy.
For Hope, just listening to the teacher’s instructions can be mental workout. “I find it extremely difficult to simply follow instructions. When someone tells me something, I'm just going to think it over five times, and wonder, did I hear that right? That overthinking takes a lot of energy.”
Hope is the only member of her family that has a hearing loss. However, her family has always been supportive and has made changes to prioritise her full participation. So are some of her best friends, who are incredibly supportive and help her when they can.
“My family is religious, and we go to church every Sunday. We had to change churches because the church that we originally attended was just too loud…So, we had to change churches to a smaller church where I was able to get immersed in the community. I'm grateful that my family is so supportive.”
“I also have two friends that come to mind. Holly, we've been friends since we were four years old. So, she's very used to me. She'll always make sure that captions are on the television so I can enjoy it. She’ll also always make sure I can understand the conversation, and repeat things when I need her to. She just has enormous patience when it comes to that, which I appreciate.”
“Also, my friend Amelia. We have a lot of classes together, and she'll write down things the teachers are saying and explain to me what they want us to do. She is happy to explain things to me and to take things a bit slower.”
Hope’s father recalls a memory of watching Master Chef with her family, which helps to illustrate the funny occurrences that can happen in a family when you’re hard of hearing.
“Everybody was really into Masterchef. I was obsessed with it,” says Hope’s father. “However, when we had the subtitle captions come up, they often obscured the pictures of the food. [Laughs]
However, that’s just how it has to be. We're always watching stuff together.”
Even at the young age of sixteen, Hope has learned many life lessons and is wise beyond her years.
“I’ve learned to worry less about how people perceive me and realise that, if people are going to judge me for the fact that I can't hear, then they're probably not the kind of people I want to be around anyway.”
“When I was younger I thought a lot about what people thought of me, and if they were going to judge me. I wish I hadn't now, I wish I just lived my life.”
Like many members of the Deaf and hard of hearing community, she has discovered the power of self-advocacy.
“Don't be afraid to ask for help when you need things because teachers can be intimidating. They get kind of annoyed if you're just constantly nagging them to re-explain something or to turn the FM system back on. I have had to learn to be more assertive about what I want…This is my education, so listen to me. You’re going to put on the FM system, and you’ve got to write notes on the board.”
For Hope, learning New Zealand Sign Language is a family affair.
“I always wanted to learn how to sign, but we never had the resources, and we couldn't figure out where we were supposed to learn. It was going to be quite expensive, but eventually, we found some lessons that were reasonably cheap from an ad in the newspaper.”
“We went to night classes, and then we discovered we could get some funding. So, we started having the lady come over to our house and teaching our whole family.”
“It's a beautiful language, and it's also quite a direct language. There’s no fluff!”
Hope’s mother Lisa can see how experiencing the Deaf community was important for her daughter.
She explained, “I can see that she feels a little bit caught between two communities, the hearing and the Deaf community. She doesn't fit in the Deaf community because we don't know anyone there.”
She continues, “Now, in the social mess of teenage life, with lots of loud noises, music, and group conversations, she's not fitting in easily. It made me wonder, that perhaps if we had explored the Deaf community when she was younger, she may have found more of a sense of belonging…It helped me realise the importance of meeting people she could associate with on the journey.”
While hearing loss has created challenges, there are a few positives that it has provided.
“It's made me much more grateful for the hearing that I do still have left and the sounds of nature that I can hear,” says Hope.
“I love music, and I think part of the reason I love it so much is that I still have it. I know that I could not have it. So, I enjoy it while I can.”
“I can also ignore the noise around me. I'm so used to having background noise and not understanding what it means. It's quite easy to hone in on what you want to and just ignore all the rest.”
Being hard of hearing has given Hope the gift of deep empathy. In the future, she wants to give back to those who are going through similar struggles.
“It's made me more passionate. It's given me the drive, and the passion to not just sit around on my bum and dare to do something in my life to help the world.”
“I think being teased has given me a sense of empathy and understanding of what other people go through and helps me to put myself in their shoes. I want to do something helpful. I've become quite passionate about the rights of the disabled and I’d love to work somewhere like the National Foundation for Deaf and Hard of Hearing.”
In part, Hope’s journey has been one of self-acceptance.
“Originally, I wanted God to heal me. And I felt like, if God didn't heal me, I'd done something wrong, and I was broken. But eventually, I realised that maybe God put this in my life for a reason. It doesn't mean that I'm broken, it is just a part of who I am.”
In our Share Your Story series, Deaf and hard of hearing New Zealanders open up about their experiences.
Stay tuned for more interviews, which will soon be released to our blog: