Anne Mok

00:06 ID

This is Studio 1 on Vision Australia radio.

00:18 Sam

Hello. I'm Sam. 

Lizzie

And I'm Lizzie. 

Sam

And this is Studio 1, your weekly look at life from a low vision and blind point of view - here on Vision Australia Radio.

00:25 Lizzie

On this week's show, we talk to an Instagrammer who's made it her mission to highlight accessible brands in Canada - Anne Mok is our guest.

00:34 Sam

As we always say at this point, please do get in touch with the show where you have experience of any of the issues covered on this week's episode of Studio One, or if you think there is something we should be talking about. You never know. Your story and insight may help somebody else who is dealing with something similar.

00:48 Lizzie

You can reach out via email at Studio 1 - at studio, number one at Vision Australia dot org... or of course, you can drop us a note on our Facebook page by going to Facebook.

01:03 Sam

Or you can even look for me. I've got a brand new Facebook profile. Sam Rickard. Maybe I'll tell you what the PLI stands for at some other stage. Mm. Hello, Lizzie.

01:22 Lizzie

Hello, Sam. And how are we going this week?

01:26 Sam

We are going well... some things going right. Some things didn't quite go right. Me and the other Sam haven't quite been able to... match our schedules up, but well, he's a busy athlete. I know what it's like to be there. And he said it had a particularly hard week of training when I reached out, and that gave me flashbacks. I've got to tell you, because Chris Nunn, my former coach at the Institute of Sport, used to have these things called Hell Weeks and we'd be doing like four sessions a day. And it was, well, it did what it says on the tin. It was a hell week.

02:03 Lizzie

Yeah, that sounds particularly painful, but I'm glad to hear that you've... you know, got the... stardust out of your eyes from Valentine's Day, and we're we're ready to hit the road again.

02:13 Sam

So actually, we're doing this as a kind of a preview to International Women's Day, because you've been rather busy on this one. I mean, it's a very handy thing for me. I don't really have the equipment required to do a Women's Day special, so...

02:26 Lizzie

I certainly do not.

02:27 Sam

So I sort of sent it over to you and said, Right, Lizzie, off you go... go for broke. And we ended up with way more material than we needed. So... well, we got this preview and well, she sounds quite interesting.

02:37 Lizzie

She is. I, you know, she directed me to a Ted Talk, which we'll talk about more in the interview. But when I listened to it, I thought, Wow, this is the perfect person to talk to for International Women's Day because of course... International Women's Day has always been a celebration and an occasion to highlight empowerment for women. And she does just that. So I am looking forward to speaking to Anne Mok.

03:01 Sam

And I mean, can you give us an idea what we've got to look forward to in another couple of weeks.

03:06 Lizzie

Yeah. So of course I will be featuring parts of her interview. And we'll also be talking to Sheyla J. Raines, who is an African American woman from Indiana who has faced many systemic barriers. But she's overcome them to live quite a fulfilling and productive life. And I think you're really going to enjoy International Women's Day, and I will throw in some facts there as well, because, you know, Studio 1 isn't the same without a history lesson.

03:32 Sam

Well, what I'm looking forward to it is simply sitting back, looking at it all happening through the studio window and drinking a beer - because nothing says International Women's Day like a bloke sitting doing nothing and drinking a beer.

03:44 Lizzie 

Well, that's right, and it's not so much that you handed me this project, Sam. It's more that I kicked you out of the studio. Don't forget it.

03:51 Sam

But anyway, so let's talk to Anne. And the first thing we've got to do is... well, I'll leave that up to you.

03:57 Lizzie

Yes. Welcome, Anne Mok to the studio. And thanks for speaking with us.

04:03 Anne

Thank you so much, Lizzy. Thank you for having me here today.

04:06 Lizzie

So the reason that I wanted to get you on the program... well, you approached me when I initially put out the feelers about this... show for International Women's Day. And you led me to a very interesting Ted Talk that you'd done. And I was so captivated and moved by the story that you told and what you had to say. So talk a little bit about where you grew up. And... you're moving from Malaysia to Canada.

04:30 Anne

So my family immigrated from Malaysia to Canada when I was just two years old. And my parents, you know, they worked really hard and they were really proud when they were finally able to buy their first home here. And it was home in a picture perfect neighborhood. It was just a few minutes walking distance to the local school. And my parents just wanted us all to belong and be part of a community.

04:57 Lizzie

So did your moving from Malaysia to Canada have anything to do with your vision impairment or... like lack of accessibility in Malaysia for, you know...

05:06 Anne

Oh, I wasn't diagnosed until adulthood with my vision loss. But growing up, I had always worn glasses since I was three years old.

05:15 Lizzie

And how did people act towards you? Because, like, obviously not everybody wears glasses. So already there, there's a difference between you and other people. And how did the people around you react to that?

05:25 Anne

I was called names... when I was a kid. So with my vision... struggles. I wear those Coke bottle thick lenses, and I would be called Four Eyes. I was short, so I would be called names because I was short. And then also because of my culture, I was also called names as well. So it was a real struggle. And then going through school, I just didn't do as well as probably my brother and sister did. And they wore glasses too. And so my family never questioned further my vision loss and being new immigrants to the country. We just went along with things, you know, not making any fusses or noises and of course...

06:15 Lizzie

Yeah. And in the Ted talk, you also told the story you opened with this really moving story about having rocks thrown through your window. So just tell us that story. And what led to this and what were the repercussions afterwards?

06:32 Anne

Yes. So at the time in my school community, there were only two Chinese families, one Japanese family and one Southeast Asian family. My brother is about three years older than me. So by the time he was in school, he was constantly bullied as an Asian kid. Me being a youngster, I didn't really know what was going on, and I remember distinctly when I was about three years old and I was sitting in one of the rooms and I was just playing on the floor in the carpet, and I remember feeling that warm sun on my back, and there was a window that overlooked the street. And then suddenly the glass just shattered and there was a rock beside me and terrified. I just ran from the room. 

You know, when you're young, you don't question where you belong or what differences are pointed out until someone tells you that you don't belong. This moment That Shattered Glass was my first real introduction to being seen as other. And those rocks were just a one time thing. It happened over and over again. Our home, our place that was supposed to be our safe haven was a target. And I was just too young to fully understand why, but I felt it. I felt the unease, the fear, the constant reminder that we were seen as outsiders. And that rock wasn't just a piece of stone. It was a message. A message that said that you don't belong here. 

And I already felt like I didn't belong because of my visual impairment. And then adding the cultural background was another layer, and I didn't know anyone who looked like me, who had a disability. I didn't see representation in the media, in my community, or even in my own circles. And even though my parents had raised us very westernised, it's still ingrained in the culture that disability isn't something that is talked about. And in fact, disability is seen as being broken in the culture.

08:38 Lizzie

So as you grew up and these differences kept getting pointed out, what impact did your not belonging or not having a sense of belonging have on your like your mental health and just the way that you function daily?

08:54 Anne

I became very quiet. I became extremely shy. I would go days at school without even speaking, and I wouldn't even raise up my hand to answer questions. I was always the kid on the report card that said, you know, I would do much better if she could participate, but I never did. I just didn't want to draw any attention to myself. I already felt like I stuck out like a sore thumb. You know, people kids would get I would get picked on, you know, be picked on last for sports. Um, I wasn't even good at math or good at piano. The the things that an Asian kid is expected to be good at. And I really struggled with that. 

And then as I moved into my teenage years, there were more Asians immigrating to Canada. But I felt even more of an identity crisis. I was too Asian to be fully accepted as Canadian, but I was too Canadian to fit in with the Asian people. So I felt very lost.

09:58 Lizzie

I think that that struck a nerve with a lot of people, because a lot of people stand at this cross section of... whether it be cultures or identities or faiths or age groups even. And the sense of not belonging can impact people so negatively. So let's move to when you were diagnosed with your vision impairment. When was that? And can you talk us a little bit through your experience with that and how it impacted you?

10:24 Anne

Sure. So I was... in my mid to late 30s when I started noticing that I wasn't able to see the things that I knew I was supposed to see, you know, in... childhood, in life, I was just getting by with glasses. I bumped into people. I was clumsy, but I just assumed that that's just me. And it wasn't until I was starting to drive, and I was... working full time and taking care of the kids. And I couldn't see the street signs ahead of me, even though I knew it by memory. But I couldn't read them anymore, and I couldn't even read the license plate right in front of me. And I thought it was so strange. 

And so I kept going to the eye doctor and he kept saying, Your eyes are fine. Like, give me a little change of prescription. But it really did nothing. And my constant sentence that I always said was, I can't see when I know I'm supposed to see. And so this went on for about eight years. And then at that last appointment, I decided maybe I'll get contact lenses. Maybe if I put them right up against my eyeballs, maybe I could see better. But in fact, it actually made it worse. And so that's when the optometrist decided to send me to a retinal specialist. 

And that was the first time that someone said, I believe you, because I honestly thought that psychologically I was having problems because I was so anxious all the time. And I had already given up driving years before this because I knew that something wasn't quite right with my vision. And on the day of my diagnosis was actually the day that I had to sign a contract for a new job that I just got. And it was a dream job, and it's something that I worked so hard to get. So it was... a really challenging time. And, you know, that struggle of when you're in the grey area of you could see but you can't see...  was, I think, probably the hardest times, of course.

12:27 Lizzie

And when the retinal specialist said to you, like, I believe you... talk us through the feelings that you felt when they said that.

12:35 Anne

I actually felt relieved... because knowing that there was an answer and that I wasn't losing it. Trusting my gut was so important, and continuing to advocate for myself and trusting my gut finally got me to this point. It took a long time, but I got there. And then we spent the next two years doing tests. And then that's when I was diagnosed with cone rod dystrophy... which is a rare inherited retinal condition that affects both the cones and rods at the back of the eyes. So those cells were dying at the back of my eyes. Yeah. 

And I just didn't know, I was very lost because I didn't know the future for me. I didn't know how fast this would progress or not. And I didn't disclose it to my employer that I had vision loss because I just didn't know. So I really led a double life for many years.

13:31 Lizzie

So does the impact of cone rod dystrophy mean that your vision is going to get worse over time?

13:36 Anne

Because there's not much known about it? Some people will and some people kind of remain stable, so there's no real answers. So I am seeing every six months by the retinal specialist. And in here in Canada it's called Fighting Blindness Canada for any clinical trials so that they monitor me and just basically study my case to see how things go.

14:00 Lizzie

Fantastic. Yeah.

14:01 Anne

And yeah.

14:03 Lizzie

Let's move forward to 2019, and you were given another diagnosis that would impact your life majorly. And I think if I get this correct, it's new daily persistent headaches. Is that correct?

14:20 Anne

That's right. New daily persistent headache. So what happened was in 2018, I decided to disclose to my employer that I was losing my vision and none of them, nobody had a clue. They were so shocked because I managed to hide it so well. But I also knew that I wasn't able to do the job that I had. And at the time, I was working as a nursing assistant in the procedure room in a fertility clinic.

14:46 Lizzie

Wow.

14:47 Anne

Yeah. And I mean, I the the interesting thing about that is that the procedure room is so organised and so detailed that I knew when things were out of place... and I worked on muscle memory, and I really new people's body language. So I was able to maneuver the space very well. I actually felt safe in that space. And so then... knowing that I was feeling deterioration in my vision loss, then I asked for accommodations, and I got that those accommodations in September of that year. And then unfortunately, a few months later in January 2019, that's when I just woke up one day and I had this terrible migraine headache that I actually still have today. 

So every day I have a headache... it's always there. It never goes away. And... those first eight months of my diagnosis, I ended up being bedridden because it was so painful.

15:49 Lizzie

Wow. And what measures do you take today to combat that?

15:53 Anne

A lot of it has been a change in my mindset. I, I accept and recognise that there is no cure for this. I will continue to see the doctors. I have a really good care team and I try different medications. The most it's done for me now is just to stabilise it. So I have a grade four out of ten pain that's just there every day... four pain. Yeah. And then I just make a conscious decision just to rest. And I live my life in the low pain moments. Because I feel like the energy that I was using to fight it took more out of me. And I just lean... into the pain. 

16:36 Lizzie

Wow. It always amazes me the power of the mindset because as people with disabilities, we already have that working against us in a way, no matter how... progressive or up to date society might be, we still have to, you know, work with a positive mindset because there are still barriers. So what were your family's reaction to all of this? Because you had just said to me prior to that... your culture isn't really accepting of people with disabilities. So what was their reaction?

17:08 Anne

It's still to this day, nobody really understands the depth of what I've gone through, what I continue to go through, and even with vision loss as well, because on the outside I look like I'm fine, but it's the inside that is struggling. And same with vision loss as well. My immediate family, like my husband, my children have been wonderful. They've been incredibly supportive. My husband has taken on the role of caregiver. He ensures that... you know, I just have to get through the day. He makes sure that he... does the groceries. He cooks so that I don't have to worry. And my kids have are older now, and they help around the house. 

So that in itself has been a huge blessing and a huge help to me. And it's allowed me to be able to just focus on my health. And I have to let I have to let those small things go before or drive me drive me nuts. But yeah, I just have to let it go because it's not going to help.

18:08 Lizzie

So let's move forward to your Ted Talk, which is really what captivated me and shaped the questions that I ask. And in the Ted Talk, you use the analogy of putting back together a mirror, and each piece of the mirror represents an aspect or an area in your life. And I think inclusion was one of them. And accessibility perhaps. So talk us through those pieces of the mirror. And why did you use the mirror analogy?

18:39 Anne

When I was crafting my Ted Talk, there was pieces that I wanted to tell and the story, and I couldn't connect it. And I really struggled. But all of a sudden it hit me that, you know, when we look in the mirror, what we see and what we believe can be very many different things. And in life, when we go through a chronic illness or a major life change, those things can totally shatter. And what do you do with those pieces after that? You know, they may not all fit in the same spots that they were before, but you can actually create something new out of that. And it's all those cracks. That is where the light shines through and where you can find hope and a new perspective. And then when you put them together, things can actually turn out better than you actually even expected.

And I found that that has been my journey after... accepting my vision loss and accepting my chronic illness. My life has turned and changed in so many positive ways that I would never have imagined. And I'm actually thankful for going through all of that, because it's led me to be the person that I am today and actually be my true self. That I'm no longer hiding anymore. Not hiding my disability. I'm not hiding my heritage. I'm fully me.

20:02 Lizzie

That is so important. And how has this changed your life? Like, obviously your jobs changed, but what else has changed?

20:10 Anne

When I was, um, bedridden for those eight months, it was, um, the lowest point. I struggled with severe depression. But one thing in my mind was, you know, I don't I don't want my children to see me give up on life and, you know, leaving a legacy for my kids. What lessons do I want them to to get out of this? And it's like in life, things happen all the time, but it's really how you move through them, not get over them. But you can carve a new path. And I want them to know that, you know, life may throw these things at you, but you are the author of your own story. You can rewrite your life and you can turn the page on that chapter. And so that's what I did. I really just dug deep into myself. 

And at the time, you know, my phone was a lifeline. I needed it to... order groceries, things like that. I still like shopping, so I'd be scrolling and I noticed that... website inaccessibility was a huge issue. And then the pandemic hit and it became even more of an issue. And I really realised, like, what can I do to help make a change? And with the pandemic, small businesses were also struggling. So I thought, you know what, I'll go on Instagram. I don't know anything about social media at all. But I knew that Instagram is a visual medium and I really wanted to challenge it. I wanted to show that we can make it as accessible as possible. We can create accessible content. And I can use that to support small businesses as well.

Because I still like to shop, I still would shop. And then I would tag the small business and then I would like post a photo of it. And it actually turned into... very healing for me. And because I looked at if I create a post, it's one day a week I can get up. I'll take a shower because it was so hard to do that at the time and, you know, to comb my hair or put on some makeup and then take a photo and then I'd rest. And then the next day I might write a caption, and then I'd rest, and then the next day I would... you know, post and then, you know, engage on social media. And that helped me to give some sort of purpose. 

And that was just one small thing that I did, but it became a snowball effect... people started to notice and suddenly the sighted community was interested in the accessibility. Brands were interested in the accessibility. And I was showing up. And that's when things really changed for me. And it was this particular moment when a young girl from another continent reached out and said, I've never seen anyone that looks like me using a white cane. And that, to me, was the moment I realised how important representation is, how important it is for me to show up and keep doing the work so that we can create ripple effects of change.

23:17 Lizzie

Wow. And that fed so beautifully into the question I was going to ask, which was, Have you had people reach out to you and describe the way that your life on social media has impacted them in a positive way?

23:32 Anne

Yes, absolutely... I've had... not only this young girl, but I've had a number of... community members, followers who have followed me. It's very quietly. And they were in that point of, I need to use a cane, but I'm afraid to use my cane because of the stigma. And just watching me go out... and just be unapologetically me... swinging my cane and then dressing up, it gave them that... push to say, Yeah, I can do this too. And it doesn't change anything more about me. I'm still me. And my motto right now is like, if people are gonna stare at me, I'm going to give them something good to stare at. So I very, you know, I will just go out there and walk. Walk it.

24:20 Lizzie

I love that so much. I mean... that's that speaks so true to my experience as well because, when I used to go out when I was younger, people used to stare at me and like, my mother and sister would say, take a picture, it lasts longer. And then I thought to myself, one day I was like, Hey, if I dress up and they do take a picture, like, that's going to be one really good looking picture.

24:44 Anne

It is.

24:49 Lizzie

What would be your message to other women that are going through similar crises? Maybe not, you know, in terms of vision loss, but maybe with their cultural identity or their faith or anything. What's your message to women?

25:05 Anne

My message would be, I think, to, you know, any person that's out there who feels like they don't belong. Whether it's because of disability or cultural identity or both. I really want them to know you are not alone. And I know what it's like to feel different, to feel like you have to shrink yourself, to fit in, to wish you could change the very things that make you, you. Just to be accepted. And for many years, I tried to stay quiet. I didn't want to stand out as the only Asian girl in the room. I didn't want to be noticed for struggling to see. I just wanted to blend in and be invisible. But here's what I wish, someone had told me back then, is that the things that make you different are actually the things that make you powerful. And those are your superpowers.

25:56 Lizzie

I love that so much... because, everybody is different. Nobody is ever the same. And if people want to find you, to watch you, go on Instagram, or to watch a Ted Talk, where can they find you?

26:14 Anne

So I can find me on Instagram at Purpose and View. And my website is purpose.com and my Ted Talk can be found on YouTube and it's called Blindsighted by Anne Mok.

26:27 Lizzie

Brilliant. And we will have all of the... links to all of those things in the podcast.

26:34 Anne

Thank you so much and thank you so much for having me. I loved having this conversation. It's been something that's been in my heart for a long time and being able to share.. the story and give voices to so many. I think it's it's powerful.

26:54 Lizzie

That's a wrap for this week's show. Thank you to Anne Mok for sharing your remarkable story with us. And of course, thanks to you for listening. Next week...

27:03 Sam

While it is it is really wonderful for people to help us out, and sometimes, yes, we do need to be helped, whether it's to find that seat on the bus or to not fall off the actual bus, which has happened to me once or twice... have you ever met somebody who is a little over helpful? The Boy Scout syndrome.

27:24 Lizzie

But between now and then, please do get in touch with us. Whether you have experience of any of the issues covered on this week's episode of Studio 1, or if you think there's something we should be talking about, you never know - your story and insight may help someone who's dealing with something similar.

27:39 Sam

You can email us, studio1@visionaustralia.org - that's studio number one at Vision Australia dot org.

27:43 Lizzie

Or you can search us up on social media, whether that be Facebook or Instagram by looking for VA Radio Network. We want to hear from you.

27:54 Sam

Bye for now.

27:56 ID

Vision Australia Radio gratefully acknowledges the support of the Community Broadcasting Foundation for Studio 1.