Katie J Redstar: My journey to accepting my deaf identity and thriving as a cochlear implant user

Growing up, I always felt alone and different to my friends. I would think to myself, ‘they will never understand how I feel or what I have been through.’

As a young child I lost my hearing suddenly. Yes, that’s right I wasn’t born deaf, I was born hearing. Losing hearing over night is any parents nightmare when their child falls ill. My mum had her suspicions that I had some sort of hearing loss before I lost it completely.

No matter how someone loses their hearing or how old they are at the time it is still a trauma, but in this life many things happen for a reason and quite often we don’t realise at the time why it happens.

Losing my hearing at such a young age did have its challenges, I was nearly 3 years old. To be honest I don’t really remember the process or what happened exactly but I remember the ‘lonely’ feeling, holding on to the hope that one day I’d get my hearing back, hoping one day I’d be like my hearing family.

Back then I was never able to embrace my deaf identity, and I was never accepting of my deafness.

After losing my hearing I was fitted with hearing aids that gave me no benefit at all and then we moved to Leeds when I was 4. I attended a mainstream school which had a deaf unit. I learned BSL to communicate with.

At the age of 6, my Mum had a meeting at school – a general open meeting with the audiologist, about a new hearing device.

Using hearing devices is not as simple as putting a hearing aid in and boom you hear clearer!… it includes having tests to make sure your auditory nerves work, brain & ear scans, hearing tests and months and months of being prodded and poked.

I had to undergo test after test to see if I met the qualifying criteria for a cochlear implant, then I had the anxious and nervous time of having an 7 hour operation. I had to deal with the pain and discomfort after the operation all with the hopeful questions of, ‘Will it work?’ ‘Will I be hearing again?’

I didn’t matter how I felt, never mind what was going through my mind, all I could think of at the time was how I was going to be hearing again with this device.

It was a rough recovery time, after 2 or 3 weeks I was back at school and my implant had not been ‘switched on’ yet. A nasty boy at my school pushed me on purpose at the implant site which caused me injury and slight bleeding, so my Mum had to come and pick me up and rush me to the GP to be checked over. Luckily there were no major issues just a clean up and prescribed painkillers and rest.

Over the next few weeks we were back and forth to Nottingham for the ‘switch on’ phase which took 4 days. To hear sound for the first time after years of hearing nothing was amazing. Things didn’t sound ‘normal’ but my brain needed to adjust to the ‘new’ sounds and I also had speech and language therapy and listening therapy. It was hard work, but I continued over the next few years at home.

Back at school, school life became hell. It seemed that after I got the implant, I DID NOT fit in. I no longer was accepted by my deaf ‘friends’ in the unit, nor was I accepted by my hearing ‘friends.’ I’d never felt so alone like I did then.

Deaf children excluded me because of the bad example deaf instructors set and the way they behaved towards me in front of the children. They would say things like the cochlear implant made me ‘hearing.’ I was proud of my implant but also felt ashamed that others made me feel uncomfortable and singled out.

Even teachers of the deaf made me feel so uncomfortable for the fact they ‘didn’t know how to teach me.’ Hearing children were just as bad with the teasing, because my voice didn’t sound like theirs, so therefore I didn’t fit in with them either.

As I was so isolated and felt so different I never accepted my deaf identity, but I did often try and fit in where I could, attending deaf youth club and deaf play-scheme. I also attended a hearing Majorettes group, I enjoyed the marching and dancing!

Having a cochlear implant has both its advantages and disadvantages. The advantages include learning to hear sounds – it’s not perfect but I can pick up some sounds, learn music, rhythm, and I am able to have spoken conversations with my family.

Over time a lot of hearing people have accepted my voice and my way of speaking. I can choose when and where I wear my implant. The disadvantage is I still miss a lot of sounds, I can’t hear speech clearly, I can’t hear lyrics on music and I can’t do contact sports.

But I am me. I am proud I took the chance with a cochlear implant and I am glad I have some sounds. Society seems to be a lot more accepting of people with cochlear implants both in the deaf and hearing world, and over the last four years I have slowly accepted my deaf identity.

Since accepting it I’ve developed more skills, shown that BSL is my first and proud language and even joined the deaf community, performing signed songs with Unify.

I am achieving so much more than I ever thought I could because I’m no longer rejected and owning my identity as a deaf person with a cochlear implant. I’m no longer being bullied or excluded from things, I no longer feel isolated.

I currently enjoy drama with Leeds deaf drama group, and I performed with Unify for the Queens Jubilee earlier this year.

I have also released 3 books one of them being a best seller, I won an award for the best cPagesampaigner of the year all while raising a very young child, teaching signed songs and teaching BSL online.

The last 12 months has been achievement after achievement. This is me, finally owning my identity and my skills and the hard work has paid off.

Katie currently lives in Leeds with her young son. She is passionate about campaigning for equality for both deaf and blind communities as she is deaf and visually impaired herself.

Insight: Working as a communication support worker for deaf pupils in a mainstream school

I have been working as a communication support worker (CSW) in a secondary school for the last six years. My job is to facilitate communication between our deaf pupils and the hearing teachers and other hearing pupils. I work in a range of subjects and usually have between one and five deaf pupils per class at a time.

I first started in working in education years ago as I trained as a professional note taker. It was during my time as a note taker that I came across students who were sign language users and met interpreters and communication support workers in this field too.

I found myself picking up sign language quite naturally and really enjoyed the interaction I had with the deaf students. I signed up for level one in BSL at a local deaf centre which was recommended to me by an interpreter colleague and I now have my level three. I would love to work towards my level six but unfortunately its not financially viable for me right now.

All of my BSL courses have been self funded, I haven’t had any support or funding for these unfortunately. At the time when I was first working as a note taker I also had a couple of side hustles as an Avon representative as well as working in crafts and attending craft fairs to sell my products.

I used all of the profits I made from these jobs to fund the sign language courses. BSL courses aren’t cheap, especially the accredited quality courses but they are well worth the investment. I would also say that as well as attending BSL courses, what has really helped me expand my BSL vocabulary and improve my receptive and productive skills is simply meeting with BSL users on a regular basis.

When I first started my job as a CSW I was quite taken aback by the range of communication skills that our deaf pupils have. Whilst some are quite proficient sign language users, most actually learn BSL from us and their deaf peers as they come from hearing families who don’t use sign. We use  BSL, SSE (signed supported english) and/or spoken english – and sometimes a combination of these – to try and meet the individual needs of each pupil.

It is quite a challenge when working with a child who is not confident in BSL or spoken english as they don’t have a language to comfortably express themselves in. It is one thing I have noticed and learned from this job, that deaf pupils are often trying to overcome language barriers or communication difficulties before they can even attempt to master a subject in education. It is an unfair place to be and I am not sure how we can solve it.

A few of our deaf pupils come to us and they are already working below what their expected grades are for their year. Some are even two or three years below their peers. It is quite common for pupils to be kept back a year at primary school so they may come to us at year seven, but they are already twelve years old, approaching thirteen.

Deafness isn’t a learning disability and most of the pupils I support are actually very bright and switched on! But unfortunately it seems that the education or social system is not designed for them. I work with a couple of students who struggle with reading english, yet they can answer questions perfectly in BSL. If only they could take examinations in BSL they would fare so much better but it is not yet permitted in the school where we are.

And then there are other pupils who don’t use BSL but are really struggling socially and so they don’t enjoy school, it’s an effort to try and engage them or get them to take part in lessons. I think the teenage years are generally quite difficult anyway, but for some of our deaf pupils, they do struggle to make friends or have good relationships at home.

When I tell people what I do, people assume it’s a similar role to interpreting but its actually very different. Trained interpreters relay information between two parties, whereas I feel my job is more about how do I make sure this student has understood this information? No two pupils are the same and I may have to give instructions in a different way or even write things down at times too.

Naturally I form a bond with the pupils as I see them daily and for some of them, I’m an adult they can trust and confide in. There have been times when I have had to report incidents of bullying or support a pupil who is upset or has gotten hurt. It can be very challenging emotionally yet its important to keep healthy boundaries.

I love my job and the fact that I get to work with these pupils every day is what keeps me going. I have many deaf friends now as well as colleagues that work in sign language so it feels like a supportive community. As a hearing person I know I will never have the lived in experience of being deaf but I would like to think I can be an ally for this community.

At the moment, the school I am working in is struggling to recruit enough CSW’s for the growing number of deaf pupils we are getting each year. As deaf schools are shutting or funds are being cut, more pupils are being sign posted to us as we are a mainstream school with a deaf resource base. Unfortunately, we need more CSW’s than we currently have to ensure all students can be supported, yet we are not receiving enough interested applicants. Why is this?

I wonder whether compared to other sign language related jobs, is the role of CSW significantly underpaid? If so, this should be recognised as there is no more valuable work in my eyes than that in education – and working with deaf students really is a privilege.

I also wonder whether the actual role is fully understood. There are two aspects to the job really – communicating and offering support. It means an attitude of flexibility and adaptability are necessary and getting to know the pupils on a individual basis.

I remember we had one new CSW start working with us and she left after one day, never to return! Apparently she became overwhelmed at the range of communication used by the pupils and rather than persevere and get to know them, she left.

The job isn’t for everyone. There are long hours and even when the school day has finished, I may have notes to take home and type up or I might have subjects I want to research or gain a better understanding of before the next days lesson.

I would like to see CSW’s recognised as a more important part of a deaf pupils education – I was lucky enough to self fund my initial sign language courses, but for others it really isn’t an option. I do believe more could be done to support the availability of BSL and I do think schools should allow deaf pupils to take exams in their preferred language.

It reminds me of the famous saying about teaching a fish to fly – if you let the fish swim they will succeed but if you try to make them fly, they’re guaranteed to fail. It’s the same for pupils in education, we can and should adapt our methods to enable the pupils to thrive.

Working as a communication support worker is very rewarding and I honestly wouldn’t change what I do.

This blog has been written anonymously as part of the Insight series – where readers are invited to share their story or news about their interesting job with The Limping Chicken. If you have a story to share please email rebecca@rawithey.com

Image courtesy of i-stock photos.