Yesterday saw the start of Deaf Awareness Week, which sees multiple organisations participating each year, in order to raise awareness and understanding. Each of them focuses on a different theme or area of importance. For example, The UK Council on Deafness are using it to ‘Celebrate’ collaborations on Awareness, Education, Employment, Information, Services and Prevention, and Action on Hearing Loss have ‘Small Changes, Big Impact’ as their motto for this year.
Mother Sider Phoebe has been profoundly deaf since birth, thanks to Sensorineural Hearing Loss. She has agreed to share her story, from coping with deafness as a child, right up to the present day, as a mother of Elijah, almost two and Fionnlagh, who was born just a few months ago. Tonight’s post centres on her experiences growing up and, on Thursday night we will post her second instalment, on pregnancy, birth and motherhood as a deaf person.
Over to Phoebe…
My hearing loss was passed down from my mother. It is not my identity but it’s a part of who I am. Growing up was tough, there was numerous hospital appointments and tests for hearing aid fittings and procedures. When I first got hearing aids I was six months old. I hated being in noisy environments and would rip them out and throw them on the floor. It got to the point where I had to have a lead attached to them and clipped onto me so I didn’t lose them; it took me a long time to get used to them. I struggle to make phone calls or talk to people unless they are facing me and I can lip read them and, if a person has a strong accent, this makes it even harder.
People didn’t understand what being deaf was like, they’d mouth words at me like ‘Can you hear me?’ and laugh behind my back when I didn’t hear them. Thankfully, I had a select few friends who would hear people mock me and stand up for me. When people hear the word ‘deaf’, they automatically assume ‘Deaf and Dumb’, which is rarely the case nowadays. I’m always ‘complimented’ with comments such as, “Oh wow, you talk really well!” or, “Gosh you really can hear me” or assumptions that I am ‘cured’ because I have bilateral cochlear implants.
I learnt to sign before I could speak, my speech and language development may have been delayed but learning British Sign Language (BSL) I could sign fluent BSL at the age of 2, really helped fast track my development so I could catch up with my peers. Whilst I had my hearing aids, hospital visits were at yearly intervals, or whenever my ear moulds got too small. This was usually recognised by hearing continuous whistling out of my hearing aids when I was wearing them. The first year after my operation I had monthly visits and after that for a year it was six-monthly then turned into yearly visits. Typical hospital visits involved sitting in a soundproof room with speakers and a little button to press whenever I heard a sound. This always gave me dreadful tinnitus and I could rarely make out whether the sound was in my head or actually coming out of the speakers… every deaf person I have ever encountered always dreads this moment. However, these tests helped my audiologist gauge whether my digital hearing aids needed reprogramming and, when I had my cochlear implants put in, whether they needed retuning. My favourite part of the visits was always when I had my ear moulds fitted; it’s the nicest feeling ever, I was quite sad about missing out on this once I had my cochlear implanted.
I had two operations for my implants – one when I was 11 and another at 16. The operation involved drilling into the bone behind my ear and peeling the skin away to insert a magnet and a coil with tiny feelers into my cochlea. Recovery time is typically two weeks and you get ‘switched on’ a month after the operation. When it was first switched on, everything sounded so loud. It was quite a huge change for me and I jumped at every little sound. Thanks to the cochlear implant I heard sounds I had never heard before, for example, the birds singing and the traffic lights beeping when they turned green. I finally felt ‘normal’, like I could hear what other people could but this is not a cure like so many people assume it to be; it’s a way of gaining a better quality of life.
At school I had a BSL interpreter who also took notes for me in lessons. This helped me hugely and paved the way for me to get 10 GCSEs at grade C or above, as well as Additional Mathematics after completing my GCSE Maths a year early. If I hadn’t received the support I required I would never had as much success as I did which is why, whenever I hear news that children who are deaf aren’t provided with this support because they can just ‘lip read’ the teacher, it upsets me. I strongly believe that there needs to be more schools with a Hearing Impaired Unit. Almost all schools have SEN units but I think hearing impairment is different and requires different levels of support compared to SEN. I had to travel out of my catchment area just to attend a school with this resource, which resulted in not having friends nearby. This made it difficult when growing up due to everyone having their own little groups. I didn’t quite fit in anywhere as I didn’t live close enough to hang out after school or during weekends.
If a parent of a hearing impaired child ever approached me and asked me for advice, it would be:
- Get your child a cochlear implant if you are offered one.
- Make sure their school provides the best support for your child. Don’t be afraid to put your foot down and ask as many questions as you need to get the care and support they require.
- Go to BSL classes. It will benefit your child hugely if you can communicate in BSL and it will not delay their speech.
- Finally, teach them that being deaf is part of who they are and that’s okay, because I am deaf and I am proud. That’s all thanks to my parents for raising me to fight through barriers and be who I am.
Dos and don’ts for hearing people when speaking to a deaf person:
- Don’t obstruct your mouth with your hand or any object or look away when speaking.
- Do (please!) talk normally. Don’t slow down your speech or exaggerate your lip patterns, this just makes it harder for us to understand you.
- Don’t get annoyed if we ask you to repeat yourself more than once
- Do have patience with us, understand we may struggle to say certain words
- Do offer a pen and paper if you encounter a deaf person who is also non-verbal (cannot speak) and this will make communication easier.
- Please don’t raise your voice at us; shouting at us wont make us understand you.
- If talking in a group do make sure the deaf person can see everyone clearly so they can lip read everyone. Please be prepared to explain what’s going on if they ask.
- If they ask you to repeat, please don’t say, “Never mind” or, “It doesn’t matter” as this can be quite upsetting and make the deaf person feel left out.
Phoebe, writing for The Mother Side xx
Join us on Thursday for the second part of Phoebe’s post, on her experiences with pregnancy, birth and motherhood.