Tilly Hawkes: “My daughter being deaf is one of the best things that could have happened to our family” (BSL)

My name is Tilly, I’m based in the Midlands and I have a profoundly deaf five year old daughter.

When my daughter was born she brought with her the complete new world that is parenting a deaf or hard of hearing child. Initially I really struggled with the diagnosis and in retrospect I think this was because she also had a diagnosis of congenital CMV (cytomegalovirus infection.)

CMV can impact a baby in many different ways and its a very scary diagnosis as there’s no way of knowing how or even if your baby will grow up. I think then finding out that Ada had mild-moderate deafness made the threat of the virus a lot more tangible and our lives were dominated by hospital appointments, blood tests and medication.

I think this made it difficult for me to really take in and learn about Ada’s deaf identity and it wasn’t until she was diagnosed with severe-profound deafness at two years old that I was fully able to digest what it all meant and what I therefore needed to do to support her.

From that point onwards what had once felt like a sad and scary thing became this wonderful part of who Ada is and I have learned so much about communication, identity and culture and how important providing BSL, deaf community and deaf role models to Ada and her family (all of whom are hearing) is.

I now feel like Ada being Deaf is one of the best things that could have happened to our family and it has been the making of me. We are endeavouring to raise her bilingually but at present she is BSL only and that is absolutely fine by me.

I am very proud to have achieved giving Ada BSL as her first language as this is not easy as a hearing parent because there is so little support and information available. Our extended family are all now learning BSL and even our church group is doing so. I hope to start my Level 6 this year and I couldn’t love learning sign language more, not least because of the connection it has brought me with my daughter.

I initially started documenting our journey on social media to try and educate our church community. It is dominated by hearing people and I worried about Ada growing up having to constantly advocate for herself in that environment so I wanted to do as much as I could for her so that she wouldn’t have to.

Over time this morphed into something very different as I started making connections with other parents of deaf children and, vitally, deaf adults. This is where I accessed everything I know about Ada’s identity and culture and it’s even where I stumbled across my first BSL tutor.

What I highlight has changed over the years but I always try and show a positive representation of what parenting a deaf child can be like. The hearing world treats deafness as a negative and something that will make life harder and in some cases that can be true but only because of how society is set up.

I want to show people that raising a BSL using child who goes to a Deaf School is something to be celebrated and encouraged, rather than a last resort because speech and mainstream didn’t work out. I try my hardest to show how much joy BSL has brought our family and how it is an attainable goal for parents to learn.

It’s always a surprise to people that it is so hard for parents to access sign language support and they are always very keen to learn about deafness. My favourite thing, however, is the amount of parents who have let me know that they have understood my message that sign language is a vital part of raising a deaf child and that they are now learning themselves.

I spend a lot of my time working to improve services available to deaf children and their parents. I believe that if hearing parents are empowered with full, balanced, accessible information about their child’s deafness they will be able to positively accept their child’s identity and support them fully. This is my driving force at the moment.

I find there is a good deal of misconception around deafness and the real barriers that my daughter does and will face. Hearing people assess deafness based on their experiences of the world and I think they often forget that this is a subjective experience.

They assume deaf people won’t be able to do certain things and that Ada will find life harder because she’s deaf. I frequently have to explain that the only reason this is the case is because society isn’t accessible and that deafness isn’t a disability in the way they think it is.

Most of the time they are receptive and eager to learn but I do often find that they don’t want to accept that barriers come from society rather than Ada being deaf and there often seems to come a point in the conversation when they are unwilling to accept my perspective and experiences.

I want people to fully accept that a life with BSL as one’s only language is a wonderful option for deaf children and I would love people to be more positive about specialist deaf schooling.

The assumptions people make can wear you down and it can be tiring constantly having to educate people and advocate for Ada.

I have had a lot of battles with the educational system about necessary provisions and this is one of the most exhausting types of discrimination.

To constantly have to prove that my child needs access to a good level of BSL and to her Deaf Community is very hard work. I think an important thing to develop is a good support network and to find professionals with the right priorities who can help you in these battles. It helps with the emotional toll it can take but also gives you some extra man-power.

Working to improve these systems is something that has given me a lot of purpose and has been a way to turn the negatives into something positive and productive.

I hope that eventually society will view deafness as a positive thing. I think things are improving in that respect and I have noticed a shift over the past five years. People no longer say “sorry she’s deaf” and now respond by asking how to sign certain things and they try and communicate with Ada.

I’d love to see this continue to improve and my hope is that society and the government will acknowledge how important it is for a deaf child to have access to sign language from birth. I would like society to focus less on cochlear implants as a “solution” to deafness and to be more positive about embracing sign language and deaf culture.

I would love for a BSL using child in Deaf School to be acknowledged as thriving and for this route to be celebrated and supported by society and the government.

Looking  back I wish I’d known to start learning BSL immediately. I would advise any parent to start learning as soon as they find out their child is deaf or hard of hearing. There’s no way of knowing what communication method a child will prefer and the medical professionals perceptions are so skewed towards speech and listening it can be hard for parents to find the right information and support to learn BSL.

I want every parent to see the joy that sign language brings to a deaf child and their family and to embrace that side of them without delay.

You can contact Tilly and follow her journey with her daughter Ada over on Instagram at @learning.adas.language.