Sophie Li
“I’m sorry, your daughter is profoundly deaf.”
A doctor says the 7 little words. Poof. My future disappears. My parents are devastated and their world is turned upside down.
I am 18 months old. I don’t understand.
Hearing aids. Hands covering mouths. Am I meant to cover my mouth too? Hands are now fiddling with my ears. I wince, and then frown.
I’m confused. I want to play, but I’m stuck in this padded cell with wires everywhere and strangers looking at me. It feels stuffy in here. Where are the windows?
I fidget. I’ve been sitting down for a very long time and I’m supposed to wait for something to happen. I glance at my mother and she’s pointing at a book and her lips are moving. Oh, play time! I try to interact. I wiggle my lips, but see heads shaking.
My mother tries again. I try again. Lips wiggle. There, I did it… no? Why are we doing this again? Hands move to fiddle with the plastic rims behind my ears.
Now I’m even more confused.
I look down at my costume and I smile. I’m a princess today. I love dressing up, but I have to wear this big box with wires. The wires are connected to the ear molds. I am not sure what they’re meant to do yet. Mummy seems to think it’s important so I’ll just have to wear it with my princess costume. At least she’s wearing a big box too.
Oh no. Mummy’s got her hand over her mouth. I’m not sure what I should do. Mummy’s looking at me, she seems to be waiting for something.
I move to mummy, and move her hand down, away from her mouth. But she doesn’t seem to get my intention, as her hand is covering her mouth again.
I’m so frustrated now. Why is mummy always putting her hand to cover her mouth? Is this some sort of test I need to pass?
I start to cry. I’m shutting down. I don’t want to do this anymore.
The tantrum lasts for hours.
We’ve been going to a hospital regularly. I don’t mind as I get a bright red shiny ring or a lollipop every time my family visits the hospital.
This time, I’m excited as I’m shown into a playroom. I love playing. A doll is handed to me. I start playing with it until I notice the doll has something on its head, it looks like a strange hair clip. Deciding I didn’t like it, I throw it away.
The doll is immediately taken off me and I watch as someone puts the strange hair clip back on the doll. The doll is then handed back to me.
I frown. This is not what I want.
I try again, removing the hair clip from the doll.
The doll is taken away and the strange hair clip is put back on again. I try this a few more times and eventually, I get the message.
Strange hair clip stays on the doll.
Noted. A small compromise since I can still play with the doll. However, this person keeps intervening my play time by pointing at the hair clip on the doll and then to me until it eventually dawns on me: I am to have the strange hair clip, just like the doll.
The last thing I remember is panicking: I did not want the strange hair clip.
Four hour operation and 75 stitches later, I receive my first cochlear implant.
I am four years old.
I feel groggy and very uncomfortable. I don’t know what to do so I’m getting distressed.
Movement.
What’s happening?
I slowly re-focus, and see that there are people in the room. Who are these people? What are they doing here? I suddenly feel shy; I panic, as I don’t know where I am. All I know is I’m not at my house.
Eventually, I see mummy. Then daddy. I’m relieved. I stay in the hospital overnight.
To be continued in Part 2…read on!
Editor's Pick
Today’s the third day of Lockdown 6.0 and I’m still processing how I feel about this. I haven’t written in a while, and I thought it was high time I got back into blogging and doing what I love, writing. There’s nothing more cathartic than writing.
Given we only exited Lockdown 5.0 just over a week ago, it feels as if we haven’t been given an opportunity to fully enjoy life post-lockdown before being ushered back into lockdown. How do we process our feelings and thoughts post-lockdown? We’ve barely had the time to process the last lockdown and its impact on us as individuals.
When the announcement came on Thursday morning stating that Victoria would be going back into lockdown as of 8PM, I felt numb. I didn’t have any words to describe how I felt at the time. I thought I was okay about it, but if I have to be brutally honest, I’m not okay about it. Like everyone else, I barely had two days to get used to life post-lockdown after Lockdown 5.0 was lifted. Did I get used to post-lockdown life this time around? Probably not.
Lockdown 6.0 is due to be lifted on Thursday night, but I’m not holding my breath. Delta, a variant of COVID-19, is a sneaky fucker. The transmission rate is higher compared to other COVID-19 variants. If the Victorian Government sees the need to extend this lockdown to get the pandemic under control, then so be it. NSW is seeing case numbers in the high 200s every day, and there’s no way Victoria wants to repeat what we went through last year.
The real question remains: how do I feel about this?
Defeated. It feels like this virus is determined to keep us at home, apart from our loved ones. I’ve been living on my own for 6 months and whilst I love it, I miss being around people. Fuck, I miss hugs. Human touch. Connection.
Speaking of connection, I miss being with my fellow Deaf people. I miss getting my Deaf fix. Catching up with friends on FaceTime or Zoom is wonderful, but it doesn’t replace the feeling of being able to sign with your Deaf peers in person.
Being able to see your language in its wondrous 3D form, like it’s supposed to be.
That feeling you get when you laugh merrily with your friends. Laughing so much until you cry.
Being present with your Deaf self whilst being with others.
I’ve seen many older Deaf people reminiscence on the golden days of Deaf Clubs, and how they wish for Deaf Clubs once again. Having been through five (soon to be six because this one isn’t done) lockdowns, I can empathise with them on the loss of Deaf Clubs. Opportunities for us to get our Deaf fix are now rare.
It’s funny how you don’t realise you miss something until it’s gone…and you realise you’ve taken it for granted.
I wanted to be able to celebrate my birthday(s) with my loved ones, but I hesitated on making plans because of the uncertainty. I do still want to be able to let my hair down and hit the town at some point, to celebrate me with my loved ones.
Goddamn it, I fucking miss being with people.
As a Deaf person and professional, I also miss face-to-face appointments with Auslan interpreters. For more than 18 months, like many Deaf people who use Auslan interpreters, I’ve utilised video remote interpreting for personal or professional appointments. Whilst VRI is fantastic and has grown so much the last two years ago, I miss being able to engage with my interpreters in person. The opportunity to debrief and/or chat with the interpreter(s) afterwards is rare as hen’s teeth nowadays. These 10 minutes you get to connect with your interpreters – oh how that feels rather sentimental.
Zoom closes. Interpreter moves onto their next job. I (or other Deaf person) move onto the next task or meeting.
I do love being able to stay in touch with family and friends through social media, text messaging and video calls. It does get tiring at times – so I need to keep reminding myself that other people are doing their best to stay in touch too.
It’s also hard to stay motivated during this time, too. I’ve had to put my platform – I Sign. I Wander., and Deaf Stories on hiatus – simply because I don’t have the motivation. I also have a few personal projects planned, but I haven’t been able to find the motivation to get started.
I’ve been trying to stay kind to myself, but when things become repetitive, it gets to the point where I say “fuck this, I’m just doing the bare minimum“.
I shower, I feed myself, I go to work (at home), and I make sure I am warm and healthy. I have things I can do around the house. I have books. I have Netflix.
Until this outbreak eases, there’s not much I can do but to keep doing what I’ve been doing and to remain connected with my loved ones in ways that works the best for us.
So, to say… I still don’t know how I feel. I’m getting there though. Maybe next time I write, I’ll have a better idea. But until then, I’ll continue processing this.
See you on the flipside,
S xx
Deaf Stories was originally established with a vision of deaf people sharing their experiences as business owners. With Janelle Whalan as my filming assistant, we interviewed four deaf people – Neil Wood, Bobbie Blackson, and Ivan Callaghan & Nicole Cooke about their businesses. The first round of Deaf Stories was funded by Deaf Services’ Life Enrichment Grant which helped us to cover expenses such as travel, software, equipment and other costs associated with Deaf Stories.
After filming, editing and releasing each interview, the engagement from the deaf community I envisioned wasn’t happening. Something was missing.
I saw there was a dire need for deaf people to share their stories on a public platform. With deaf clubs disappearing from our very own eyes, where were opportunities for deaf people to share their stories in a casual and relaxing environment?
One of my favourite memories from my childhood was when deaf children from various schools across Southeast Queensland would get together for a day to celebrate Deafness Awareness Week at New Farm Park in Brisbane. Every year I wound find myself sitting with my fellow deaf peers watching Julie Lyons tell stories through Auslan and visual vernacular. The feeling of being captivated and being taken into another world through a deaf person’s storytelling skills – that was something I carried with me for so many years. I still carry this feeling with me today.
Deaf people are notorious for being excellent storytellers. This is because storytelling is a fundamental part of the deaf community. Ledwith (2011) stated that stories act as social-cultural glue, which means they define societies, cultures, and communities. Like sign language, storytelling acts as glue to bring the deaf community together.
For the second round of Deaf Stories, I was planning on reframing it to include stories from various deaf people around the country. My original plans were thrown out of the window when Australia was hit by the COVID-19 pandemic. With travel restrictions in place, this meant I was now unable to travel around the country collecting stories from deaf and hard of hearing Australians.
The first couple of weeks in lockdown, I watched numerous creators change their plans and projects. I also saw a number of friends in the arts make changes to their projects. Everything had to be moved online. That gave me the idea: why not make Deaf Stories an online platform for the deaf community watch interviews happen in real time? Give the deaf community a sense of belonging, similar to being at a deaf club. Hence the decision to reframe it as Deaf Stories LIVE.
The first Deaf Stories LIVE interview with Andrew Wiltshire was a huge success. I saw the engagement I had longed to achieve. I saw deaf, hard of hearing and hearing people respond to the interview.
Through the first interview, Andrew displayed his skills as a brilliant storyteller. According to Davis Haggerty (2007), being a skilled storyteller becomes an influential trait in the deaf community. Andrew is considered a role model to many deaf people.
Role models like Andrew are essential in the deaf community, particularly for young deaf people who are still figuring out their identities. Young deaf people should have access to role models within the deaf community, as Sutton-Spence (2010) believes it helps young deaf people to develop their personal, linguistic, and social identities.
Nović (2016) says deaf culture is founded on storytelling; it’s a culture obsessed with its own language. With the use of sign language such as Auslan, we work on the art of storytelling in various forms such as poetry, visual vernacular, sign singing, etc. It’s not something that is perfected overnight; it takes a lot of practice and consultation by our fellow deaf peers to ensure the stories are easy to understand through Deaf eyes.
Deaf people often learn best through storytelling. We are encouraged to participate through participation and understanding; belonging and confidence grows as we are listened to, valued and taken seriously (Ledwith, 2011). Without storytelling, how can change occur within the deaf community? How can we learn about the world around us? How can we connect with the deaf community using the Deaf experience?
“We tell our stories to transform ourselves; to learn about our history and tell our experiences to transcend them; to use our stories to make a difference in our world; to broaden our perspective to see further than normal; to act beyond a story that may have imprisoned or enslaved us; to live more of our spiritual and earthly potential.” ~ Rachel Freed (2011)
Storytelling empowers deaf and hard of hearing people to share their experiences; to start discussion; and to create change within the community and in the mainstream. Change doesn’t occur without sharing personal stories. Stories also encourages us to connect with and understand each other better.
I strongly believe in the power of storytelling and it’s why I chose to frame Deaf Stories around the notion of storytelling we have come to know and enjoy for many years within the deaf community.
In my next blog/vlog, I will be talking about vulnerability and why it’s an important element in storytelling.
Big love,
S x
References:
Davis Haggerty, L. (2007). Storytelling and leadership in the Deaf community. Rochester Institute of Technology, USA.
Freed, R. (2011). The Importance of Telling Our Stories.
Ledwith, M. (2011). Chapter Three: Doing Community Development in Community Development – A Critical Approach.
Nović, S. (2016). At Home in Deaf Culture: Storytelling in an Un-Writable Language.
Sutton-Spence, R. (2010). The Role of Sign Language Narratives in Developing Identity for Deaf Children. Journal of Folklore Research.
Leave A Comment
Leave a Reply
Related Posts
Today’s the third day of Lockdown 6.0 and I’m still processing how I feel about this. I haven’t written in a while, and I thought it was high time I got back into blogging and doing what I love, writing. There’s nothing more cathartic than writing.
Given we only exited Lockdown 5.0 just over a week ago, it feels as if we haven’t been given an opportunity to fully enjoy life post-lockdown before being ushered back into lockdown. How do we process our feelings and thoughts post-lockdown? We’ve barely had the time to process the last lockdown and its impact on us as individuals.
When the announcement came on Thursday morning stating that Victoria would be going back into lockdown as of 8PM, I felt numb. I didn’t have any words to describe how I felt at the time. I thought I was okay about it, but if I have to be brutally honest, I’m not okay about it. Like everyone else, I barely had two days to get used to life post-lockdown after Lockdown 5.0 was lifted. Did I get used to post-lockdown life this time around? Probably not.
Lockdown 6.0 is due to be lifted on Thursday night, but I’m not holding my breath. Delta, a variant of COVID-19, is a sneaky fucker. The transmission rate is higher compared to other COVID-19 variants. If the Victorian Government sees the need to extend this lockdown to get the pandemic under control, then so be it. NSW is seeing case numbers in the high 200s every day, and there’s no way Victoria wants to repeat what we went through last year.
The real question remains: how do I feel about this?
Defeated. It feels like this virus is determined to keep us at home, apart from our loved ones. I’ve been living on my own for 6 months and whilst I love it, I miss being around people. Fuck, I miss hugs. Human touch. Connection.
Speaking of connection, I miss being with my fellow Deaf people. I miss getting my Deaf fix. Catching up with friends on FaceTime or Zoom is wonderful, but it doesn’t replace the feeling of being able to sign with your Deaf peers in person.
Being able to see your language in its wondrous 3D form, like it’s supposed to be.
That feeling you get when you laugh merrily with your friends. Laughing so much until you cry.
Being present with your Deaf self whilst being with others.
I’ve seen many older Deaf people reminiscence on the golden days of Deaf Clubs, and how they wish for Deaf Clubs once again. Having been through five (soon to be six because this one isn’t done) lockdowns, I can empathise with them on the loss of Deaf Clubs. Opportunities for us to get our Deaf fix are now rare.
It’s funny how you don’t realise you miss something until it’s gone…and you realise you’ve taken it for granted.
I wanted to be able to celebrate my birthday(s) with my loved ones, but I hesitated on making plans because of the uncertainty. I do still want to be able to let my hair down and hit the town at some point, to celebrate me with my loved ones.
Goddamn it, I fucking miss being with people.
As a Deaf person and professional, I also miss face-to-face appointments with Auslan interpreters. For more than 18 months, like many Deaf people who use Auslan interpreters, I’ve utilised video remote interpreting for personal or professional appointments. Whilst VRI is fantastic and has grown so much the last two years ago, I miss being able to engage with my interpreters in person. The opportunity to debrief and/or chat with the interpreter(s) afterwards is rare as hen’s teeth nowadays. These 10 minutes you get to connect with your interpreters – oh how that feels rather sentimental.
Zoom closes. Interpreter moves onto their next job. I (or other Deaf person) move onto the next task or meeting.
I do love being able to stay in touch with family and friends through social media, text messaging and video calls. It does get tiring at times – so I need to keep reminding myself that other people are doing their best to stay in touch too.
It’s also hard to stay motivated during this time, too. I’ve had to put my platform – I Sign. I Wander., and Deaf Stories on hiatus – simply because I don’t have the motivation. I also have a few personal projects planned, but I haven’t been able to find the motivation to get started.
I’ve been trying to stay kind to myself, but when things become repetitive, it gets to the point where I say “fuck this, I’m just doing the bare minimum“.
I shower, I feed myself, I go to work (at home), and I make sure I am warm and healthy. I have things I can do around the house. I have books. I have Netflix.
Until this outbreak eases, there’s not much I can do but to keep doing what I’ve been doing and to remain connected with my loved ones in ways that works the best for us.
So, to say… I still don’t know how I feel. I’m getting there though. Maybe next time I write, I’ll have a better idea. But until then, I’ll continue processing this.
See you on the flipside,
S xx
Deaf Stories was originally established with a vision of deaf people sharing their experiences as business owners. With Janelle Whalan as my filming assistant, we interviewed four deaf people – Neil Wood, Bobbie Blackson, and Ivan Callaghan & Nicole Cooke about their businesses. The first round of Deaf Stories was funded by Deaf Services’ Life Enrichment Grant which helped us to cover expenses such as travel, software, equipment and other costs associated with Deaf Stories.
After filming, editing and releasing each interview, the engagement from the deaf community I envisioned wasn’t happening. Something was missing.
I saw there was a dire need for deaf people to share their stories on a public platform. With deaf clubs disappearing from our very own eyes, where were opportunities for deaf people to share their stories in a casual and relaxing environment?
One of my favourite memories from my childhood was when deaf children from various schools across Southeast Queensland would get together for a day to celebrate Deafness Awareness Week at New Farm Park in Brisbane. Every year I wound find myself sitting with my fellow deaf peers watching Julie Lyons tell stories through Auslan and visual vernacular. The feeling of being captivated and being taken into another world through a deaf person’s storytelling skills – that was something I carried with me for so many years. I still carry this feeling with me today.
Deaf people are notorious for being excellent storytellers. This is because storytelling is a fundamental part of the deaf community. Ledwith (2011) stated that stories act as social-cultural glue, which means they define societies, cultures, and communities. Like sign language, storytelling acts as glue to bring the deaf community together.
For the second round of Deaf Stories, I was planning on reframing it to include stories from various deaf people around the country. My original plans were thrown out of the window when Australia was hit by the COVID-19 pandemic. With travel restrictions in place, this meant I was now unable to travel around the country collecting stories from deaf and hard of hearing Australians.
The first couple of weeks in lockdown, I watched numerous creators change their plans and projects. I also saw a number of friends in the arts make changes to their projects. Everything had to be moved online. That gave me the idea: why not make Deaf Stories an online platform for the deaf community watch interviews happen in real time? Give the deaf community a sense of belonging, similar to being at a deaf club. Hence the decision to reframe it as Deaf Stories LIVE.
The first Deaf Stories LIVE interview with Andrew Wiltshire was a huge success. I saw the engagement I had longed to achieve. I saw deaf, hard of hearing and hearing people respond to the interview.
Through the first interview, Andrew displayed his skills as a brilliant storyteller. According to Davis Haggerty (2007), being a skilled storyteller becomes an influential trait in the deaf community. Andrew is considered a role model to many deaf people.
Role models like Andrew are essential in the deaf community, particularly for young deaf people who are still figuring out their identities. Young deaf people should have access to role models within the deaf community, as Sutton-Spence (2010) believes it helps young deaf people to develop their personal, linguistic, and social identities.
Nović (2016) says deaf culture is founded on storytelling; it’s a culture obsessed with its own language. With the use of sign language such as Auslan, we work on the art of storytelling in various forms such as poetry, visual vernacular, sign singing, etc. It’s not something that is perfected overnight; it takes a lot of practice and consultation by our fellow deaf peers to ensure the stories are easy to understand through Deaf eyes.
Deaf people often learn best through storytelling. We are encouraged to participate through participation and understanding; belonging and confidence grows as we are listened to, valued and taken seriously (Ledwith, 2011). Without storytelling, how can change occur within the deaf community? How can we learn about the world around us? How can we connect with the deaf community using the Deaf experience?
“We tell our stories to transform ourselves; to learn about our history and tell our experiences to transcend them; to use our stories to make a difference in our world; to broaden our perspective to see further than normal; to act beyond a story that may have imprisoned or enslaved us; to live more of our spiritual and earthly potential.” ~ Rachel Freed (2011)
Storytelling empowers deaf and hard of hearing people to share their experiences; to start discussion; and to create change within the community and in the mainstream. Change doesn’t occur without sharing personal stories. Stories also encourages us to connect with and understand each other better.
I strongly believe in the power of storytelling and it’s why I chose to frame Deaf Stories around the notion of storytelling we have come to know and enjoy for many years within the deaf community.
In my next blog/vlog, I will be talking about vulnerability and why it’s an important element in storytelling.
Big love,
S x
References:
Davis Haggerty, L. (2007). Storytelling and leadership in the Deaf community. Rochester Institute of Technology, USA.
Freed, R. (2011). The Importance of Telling Our Stories.
Ledwith, M. (2011). Chapter Three: Doing Community Development in Community Development – A Critical Approach.
Nović, S. (2016). At Home in Deaf Culture: Storytelling in an Un-Writable Language.
Sutton-Spence, R. (2010). The Role of Sign Language Narratives in Developing Identity for Deaf Children. Journal of Folklore Research.
[…] Continued from Part 1: […]
We love you now. We loved you as a baby. You and your mom stayed often with my sister Pat in Dallas. You are a wonderful human being. You were how we came to know your remarkable parents.
I want to read on
Fondly,
Mike Nichols.
Mike – such wonderful memories! Thank you for your lovely comment. I could never become the person without my parents, they have been an important influence in my life.
I feel like I’m reading what my daughter might write years later.
Love love this comment 🙂