Deaf Awareness Week 2019: who inspires the inspirational?

From 6 to 12 May, Deaf Awareness Week 2019 is celebrating role models, focusing on different areas of life and work to raise awareness and the challenges of deafness and hearing loss faced by 1 in 6 people in the UK.

Some of Great Ormond Street Hospital’s (GOSH) patients, clinicians and supporters with experience of hearing loss tell us how they’ve been inspired by their role models both in and outside of the hospital.

Mela, age nine

Mela was born with Apert syndrome, a genetic disorder affecting the development of bones in her skull, face, hands and feet. As a result of her condition, Mela has hearing loss, glue ear (where the ear canal fills up with fluid) and wears a hearing aid in her right ear.

“My GOSH role model is Dr Gill Smith from the Plastics team. She’s a brilliant person and always makes me feel welcome with a great sense of humour. She’s very nice and explains my care after I’ve had an operation and at my appointments.

“When I’m not at GOSH, I’m inspired by my teaching assistant, Miss Nye. She helps me at school for 15 hours every week. She’s patient and spends time explaining work that I find difficult during class, like maths and hard test papers. Miss Nye is really funny and likes Disney – just like me!

Mela’s mum, Paula, says: “Mela is totally inspired by Miss Nye, and she’d love to become a teaching assistant when she’s older, to help other children. Without the extra help, Mela would struggle, but luckily, she’s in great hands and surrounded by uplifting and positive people to give her the best support.”

Josh, age 10

Josh has Norrie disease, a condition that affects mainly boys – they are born blind or go blind shortly after birth. In addition to autism and cognitive impairment, it can also cause hearing loss, something which Josh has begun to experience.

“At GOSH, Maria Bitner-Glindzicz (a clinical geneticist at GOSH and UCL Great Ormond Street Institute of Child Health) is my role model. When I was feeling sad during a skin biopsy, she made me laugh and cheered me up.

“She talked with me about music. She was kind and funny. Her voice was light and happy. She was a role model because she cared, and she wanted to help people with Norrie disease.

“I have two role models outside of GOSH. One is Paul Pogba, Manchester United player. I think he’s the best player – he scores goals and I admire his focus. Others say he’s not that focused, but he has to be because he scored 14 goals this season. He is a goal machine!

“My second role model is Mick, my judo instructor. I do judo each week, and Mick is kind, funny and patient. He explains all the moves to me and then teaches them to me. Sometimes I feel scared before a fight, but afterwards, I feel great, especially when I win! Mick tells me I can do it and he always encourages me and believes in me.”

Paris, age 14

Paris has grown up profoundly deaf. She recently chose to be fitted with a cochlear implant at GOSH, which does the work of the damaged parts of the inner ear and provides sound signals to the brain.

“Jess Roberts, who works for GOSH Charity, is a role model to me. She’s amazing and works as part of a team who has already helped to raise money towards the new Sight and Sound Centre, which I’ll go to when it opens. When I did a speech at a GOSH event, Jess supported me and was very helpful; she empowered me so that I had the best experience.

“Outside of GOSH, Paula Garfield – who is Artistic Director of Deafinitely Theatre ­– is an actor and director, who is also deaf. I’d like to be an actress when I’m older, and she’s also a role model for me because of what she’s succeeded in. She’s achieved many things, such as directing and producing many plays for deaf people to act in, including at Shakespeare’s Globe.”

Brindha Anandanadarajah

Brin is a Senior Audiologist who has been at GOSH for 10 years. Supporting patients with their hearing and balance issues, Brin is passionate about helping children with hearing loss to communicate with their friends and family, especially when they are also dealing with other complex and serious health problems.

“My role model is Premi Pushpalingham – Fulham Deaf Football Club player. She’s not only deaf, she’s amazing at football and also Sri Lankan!” 

Dame Evelyn Glennie

GOSH Charity supporter Dame Evelyn Glennie is a virtuoso multi-percussionist. At the age of eight, she began to lose her hearing, and at 12 years old she was diagnosed profoundly deaf. She has taught herself to hear with parts of her body other than her ears and often performs in bare feet to feel the music better.

"As a teenager, my role models were Rob Forbes, who was my peripatetic percussion teacher at school, and the Canadian pianist Glenn Gould.

"I also looked up to cellist Jacqueline Du Pré, who later had multiple sclerosis, which sadly affected her ability to play later in life."

GOSH Charity is fundraising towards the Sight and Sound Centre, supported by Premier Inn, which will be the UK’s first dedicated facility for children with sight and hearing loss, like Josh, Paris and Mela. Visit our Sight and Sound Centre page to find out more and how you could help.