What it really feels like growing up deaf
One in six people in Northern Ireland has hearing loss and to mark Deaf Awareness Week, Linda Stewart talks to two women about the lack of understanding surrounding the disability.
'I wanted to make sure that others didn't face the same barriers I had experienced'
Action on Hearing Loss information manager Mariette Mulvenna (41), from Kilrea, has been deaf from birth. She is married to Michael (48), who is also deaf, and they have four hearing children, Cormac (13), Conor (10), Gemma (6) and Declan (3). Mariette says:
I am the youngest in my family - I have two brothers and two sisters. The first three older children are hearing and I have one deaf sister. There are no genetic reasons - mum and dad did look into that to find out why the last two children are deaf, but it was unknown.
Because I have a deaf sister, I didn't notice a difference between me and other children until I was seven or eight. I was going to a deaf school in Dublin but my other siblings went to school locally and I started to wonder why I had to travel so far.
I went to St Mary's in Cabra, which is a special school for deaf girls. All the teachers were trained in how to teach deaf children. The only difference would have been class size - there was a maximum of eight girls in a group and the teachers were able to provide a better standard of teaching because everyone sat at the front. It meant you could see the teacher's face and lipread and follow what was going on. The other difference was that we had special equipment - we each had a desk hearing aid system with a microphone and the teacher had their own microphone.
I went to the Belfast Institute for Further and Higher Education (BIFHE) for college and that was a big shock to the system - it was that hearing environment with rows of seats which I wasn't used to. All the hearing students would sit at the back and there was me sitting like an oddball on my own at the front as I had to be able to see the interpreter.
Because my peers at BIFHE were hearing, I couldn't get support as easily. There was a unit that had responsibility for booking the interpreters and that was dependent on the student's timetable. But if I wanted to chat, I had to check if the interpreter was free to come and sit with us - sometimes I had to communicate with my peers by writing things down. It took a long time to settle and to make friends - I would say over a year.
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Growing up on a farm, I always wanted to become a vet but I changed my mind later on. I decided I wanted to work in finance and be an accountant. I studied finance at the University of Ulster in Coleraine and after that I joined a graduate finance programme. During this I had to complete two work placements. My first was at Northern Bank and, while the placement itself was fine, I realised it was not the career path I wanted to follow.
Again, work was a whole new world for me. The people were lovely but I was very isolated. I just got on with my work and I didn't necessarily know what was going on around me.
For my second placement I was keen to do something completely different so I arranged my placement to be with The Royal National Institute for Deaf People (RNID, now Action on Hearing Loss).
I really liked it - I realised that because I had experienced many barriers being deaf, I wanted to make sure others with hearing loss weren't facing those same barriers. I've been here now for 17 years and that passion still hasn't worn off.
People often have a lot of misconceptions about being deaf - the one that I often experience is when someone says 'I didn't know deaf people can drive'. I'm like 'yeah, you don't need an ear to be able to drive a car - you need your eyes but that's about it'.
And there's a funny story about the airport - a few years ago my (deaf) friends and I decided to go to New York for a break. The girl at the check-in desk told us to move to one side - we were hoping it was an upgrade. Then she made this call for special assistance and a staff member came over with one wheelchair. We just looked at them. I felt terrible for the member of staff that had to bring a wheelchair - they were so embarrassed. I never asked for help in the first place - I'm fine and I can find my own way, but the person at check-in just made that decision for me.
When special assistance was requested they had to follow us everywhere around the airport, even around the duty-free. They came into the toilet and said that we had to use the disabled loo. We were so glad when we got to customs and they had to leave us alone.
I would love it if the world was more deaf-friendly and accessible for people with hearing loss. I'd love to have the choice to go to the cinema any time I fancied and watch whatever I wanted instead of having to go at a time when they decide to subtitle a movie.
As a deaf person, I've personally seen and experienced the many barriers that deaf people face on a daily basis. Working in Action on Hearing Loss allows me to be front and centre in actively addressing and removing these barriers, which is hugely rewarding."
'The realisation that none of my schoolmates were like me and I was the odd one out was sobering'
Tasha Henderson (26), from Belfast, has impaired hearing and works as a part-time customer service assistant and is a freelance actress and videographer. She has two brothers and three younger step-siblings and wants to become a full-time actress. Tasha says:
I sort of always knew that I was deaf as my parents told me from a very young age about my deafness, especially since I spent a lot of time in and out of hospital for tests, check-ups and operations, all related to my hearing and ears.
I remember playing in the playground with the other children and I think some remark was made about me being different and not like them. I do remember the realisation really hitting me then, that none of my classmates or schoolmates were like me and I really was the odd one out. It was very sobering.
My parents ensured that I got the support I needed and ensured that my educational needs were being met throughout my time in school.
Towards the end of primary school, I got a radio box that we referred to as "the box". It was a mic and speaker set, where the teacher wears the mic and the speaker would be on my desk in front of me. My primary school did amazingly to cater to my needs and all my teachers were supportive.
Secondary school was a different story. I didn't get much support or even the extra time that I was entitled to in my first year, and we didn't know why.
I really struggled at the beginning. I nearly failed a lot of my classes by the end of first year, and was told in the beginning of second year that if I didn't work harder, I would be moved into a lower-level class.
Some of my teachers in secondary school were fantastic, doing their best to help me, but the overall support provided by the school was not that great, considering we had to fight for it occasionally.
Deafness is a very socially isolating disability, and certainly it made me feel more isolated and more confused about my place in the world. But I also met some awesome people and other deaf people that were very influential in my life, who I still remain friends with to this day.
My hearing has deteriorated over the years, and this may continue in the future depending on the number and severity of ear infections I may get or if there is any trauma. The last infection I got when I was a child resulted in quite a drop in my remaining hearing. But I'm very careful with my ears now and do my best to take care of my remaining hearing.
I'm pretty good at being able to "get by" and generally ask for help if I need it. For my HR position, it required me to use phones. I find phone calls difficult to understand and get severe anxiety using them, to the point I've cried.
Thankfully, my manager was so open-minded and really engaged with us so we could come up with a solution. My team were really fantastic when I struggled with phones and sometimes with communication, and they were all so open to getting deaf awareness training. It was really refreshing to experience an employer go above and beyond what is expected of them.
Doing my acting can be a bit of a challenge as sets can generally get noisy so if I was doing a gig as an extra, I generally try to make friends with the other extras and ask them about anything I missed, or failing that I ask the co-ordinator.
The biggest misunderstanding I run into is that I'm "not actually deaf" because I am still able to hear a little and I don't have a speech impediment. I've been told by strangers, hearing and deaf, friends and on one occasion, someone related to my family, that I am not deaf because I "can still hear".
As a person who really struggled to accept their disability and who struggled to understand their identity, it really hurts and infuriates me when I get told this, especially when it's from other deaf people. I understand that it's to do with awareness, but by telling me I'm not actually deaf after I tell you that I am is dismissing my disability and my identity.
I would love businesses and people in general to become more deaf aware and for there to be more opportunities, access and assistance for deaf people in accessing employment and also with mainstream education - also, to include British Sign Language as part of the school curriculum in languages similar to Spanish and French.
I'd read somewhere that before we consider even communicating with people from other countries, we should be able to communicate with the people in our own country first, and I think it's a great mindset. It would be a step towards inclusivity, equality and positive communication."
Awareness week fundraising drive
Action on Hearing Loss is encouraging businesses, schools and communities to celebrate Deaf Awareness Week, which runs until May 12, by holding a Dress in Decibels day, organising a bake sale or taking part in a lipreading challenge.
The charity is offering free hearing checks at its offices in Belfast, Londonderry and Omagh tomorrow (Wednesday) from 8am to 6pm. This is not a full hearing test, but will indicate whether your hearing is within the normal range and if you need to see your GP.
People are encouraged to share photos on social media with the hashtag #DeafAwarenessWeek and tag @hearinglossNI on Facebook, Twitter, or @actiononhearingloss_ni on Instagram.
To download your free Deaf Awareness Week Fundraising Pack, please visit www.actiononhearingloss.org.uk/fundraise4daw