The Power of Giving Back

Written by: Anita Grover

“Mummy, have you always helped other people who are deaf?” asks my nine-year-old son. “That’s an interesting question”, I say, “because I found it quite difficult to accept my hearing loss when I was younger, and didn’t really know anyone else who was deaf.”

My hearing loss was only picked up when I was seven years old, in the absence of a Newborn Hearing Screening Programme in the U.K. at that time. I went through school and university without having any hearing technology and relied on a combination of partial hearing—that was worsening—and lip-reading. Given that my loss was progressive, I found it increasingly difficult to participate fully in the world around me. I was grateful for the support I received from speech-to-text reporters and my family that enabled me to do my job, working for the U.K. government. I got by in social situations but it was challenging and tiring. It wasn’t until I had surgery for a cochlear implant (CI) in 2006 that things changed quite dramatically, and for the better. In summary, I found myself re-engaging on a new level with the world around me.

I was invited back to the London hospital that supported me to give a talk about my experience to a group of parents and adults who were starting out on their CI assessment journey. I remember going to the same session when I first started out. The honesty and reflections of the three individuals I met that day helped me towards the decision of pursuing CI surgery. They spoke to me in a language that I understood, reflecting on experiences that I could relate to. They told me about the good days and bad days that they had; the things that they found difficult at first like distinguishing between sounds as well as the wonder of discovering new sounds for the first time, like birdsong.

They addressed the fears that I had and gave me their different perspectives on the possibilities. I drew on their words and experience to help me in the weeks and months after my surgery too. When I gave my presentation, it was the first time that I had really spoken about my journey and realized just how important it was to give back and how shared personal experiences can have such a significant impact.

Fast forward to 2013. I was now a mom of 2.5-year-old twins. I had left my role in government after 20 years and became aware of an amazing professional and personal opportunity to lead a charity working with deaf children and their families in the U.K. I was struck by the consistently strong outcomes being achieved by children from their auditory-verbal program whose families had access to support in their preschool years. I saw videos of the children speaking for themselves and talking about what they got up to each day in mainstream schools, like acting in school plays and learning musical instruments. I read stories from families about their journey from first finding out that their child had a permanent hearing loss to seeing them thriving in school and beyond.

Yet few people knew about this evidence-based, family-centred early intervention program in the U.K. Families had limited access to such support and still had outdated perceptions of what children with hearing loss could achieve. Having spent 20 years working on strategy and communications for the U.K. government, it was a rare opportunity for me to give back, as a person with profound hearing loss, and to use my professional skills to make a difference.

For the last seven years, I have been Chief Executive of this wonderful charity: Auditory Verbal UK (AVUK). I’m privileged to work with a fantastic team as well as with colleagues from around the world who are working to enable children with hearing loss to have the same opportunities in life as their typically hearing peers. AVUK provides a family-centred intervention program and an AG Bell-accredited training program for professionals, working to transform services and outcomes for children with hearing loss in the U.K. As a charity we rely on the income we receive from people who are giving back to subsidize the services we provide. Without that support we could not do what we do.

It is incredibly rewarding to work in this field and to know that some of my personal experience is helpful to those parents who are experiencing hearing loss in their family for the first time when their child is initially diagnosed. At AVUK, we also put families in touch with other families who have similar experiences; connections are made in our centers, virtually and through social media. We share videos and stories on our website. Many people give their time voluntarily to support our work by sharing their expertise and helping to shape our strategy and services. I am very grateful to all of them.

As a team, we give back to others wherever we can: we run free events; we work to secure bursaries so that speech-language pathologists and educators of the deaf can pursue training with us. We work with other charities and organizations in the U.K. and around the world to support children with speech, language, and communication needs. Sharing expertise and experience with each other is so important and crucial in the current COVID-19 pandemic where everyone is facing unprecedented changes in their personal and professional lives.

Last year, I delivered a presentation to my children’s primary school when they were exploring different disabilities. I talked to them about living with hearing loss and how we can support people in different ways. My objective had been for every pupil to see that a child with hearing loss could do the same things that they could do when receiving the support that is right for them and their family. Two weeks after, the school organized an exhibition of the children’s work and I was invited to attend along with the other children’s parents.

Some of the comments I overheard were: “Mummy, there’s the lady who told us that deaf children can do the same things as us”, followed by another who wanted to show their parents some of the technology that helps people with hearing loss. “That lady said she can’t hear anything without that cochlear implant thing on her ear; really, she can’t hear ANYTHING, but when she puts it on, she can hear all the sounds that we can hear. She said she had to work really, really hard after she had an operation, but she said it was soooooooo worth it”. Then the third child came up with her parents and said “Daddy – do you know that we actually hear with our brains…”

It took a long time for me to accept my hearing loss and to talk about it. I’d like to thank the people who helped me on my journey and hope that in some small way, I can help many more in future.

#thepowerofgivingback

Anita Grover is the CEO of Auditory Verbal UK, London.

 

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