A Journey of Advocacy and Empowerment | Anne Mok, The Blind Storyteller

In this inspiring interview, Jillian Comstock sits down with Anne Mok, an advocate, TEDx speaker, and a dedicated champion for the visually impaired and chronic illness communities. Anne shares her journey of navigating life with cone-rod dystrophy and new daily persistent headache (NDPH) and how she has used her experiences to create a more inclusive world.

Key Highlights:

• Discover how Anne Mok uses social media to connect with and empower individuals with visual impairments and chronic illnesses, bridging the gap between the sighted and visually impaired communities.
• Learn the story behind Anne’s decision to use the username “Purpose In View” and the significance it holds in her mission to bring purpose into view during challenging times.
• Hear about the challenges Anne faced when she began using a white cane and how she overcame the associated stigmas to become a role model for others.
• Be inspired by Anne’s vision of a barrier-free world where everyone can live to their full potential, regardless of disabilities.

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Transcript:

Jillian Comstock:

Hi everyone. Thank you for joining us today. My name is Jill, and welcome to My Hero 360. Here at My Hero 360, we honor, celebrate, and connect heroes worldwide. Their voices can serve as a catalyst for change, encouraging others to find their own strength and pursue their passions. Today we are showcasing Anne Mok’s story. Anne, thank you so much for being here today and allowing our team at My Hero 360 to share your unique story.

I’ve read extensively about your story. We’ve met before, and I’m so excited because your story is so inspiring and so compelling, and it needs to be heard and the folks out there need to hear it. Before we begin, I want to give you the opportunity to introduce yourself and provide a little background so our audience can get to know you a little better.

Anne Mok:

Sure. Hi everyone. I’m so happy to be here. Thank you, Jillian, for having me and My Hero 360 as well. My name is Anne Mok. I am an advocate, a TEDx speaker, and I just am here to just cheer on the visually impaired community and the chronic illness community and just bringing awareness to the struggles and really connecting the sighted community to the visually impaired community and bringing communities together so that we can bring education and awareness.

Jillian Comstock:

Let’s jump right in. One of the first things I noticed about you, when I first discovered you and your profile, is that you don’t have your name displayed on any of your social channels. Why did you opt for the username Purpose In View, across your social channels and your website instead of using your personal name? Could you share the significance or inspiration behind choosing this particular phrase?

Anne Mok:

Sure. I chose the username Purpose In View really to reflect my commitment to bringing purpose and a positive change into view, especially during challenging times for me personally and in a broader sense in terms of societal struggles. For me personally, I had always struggled with my vision from a young age since I was 3 years old, and it wasn’t until adulthood that I was finally diagnosed with a rare inherited genetic condition called corneal dystrophy. Struggling with that throughout my life was difficult. I had basically hid my disability for a long time. Then suddenly on January 1, 2019, I was struck with a migraine-like headache that to this day I still have. Even as I’m speaking here, it’s reverberating in the back of my head. At this stage, I’m always at a pain level 4 every day.

I was diagnosed with something called NDPH, new daily persistent headache, another rare migraine-like condition. In that first 8 months, it was completely debilitating. I was bedridden for those first 8 months of my diagnosis. While bedridden, I really struggled with digital accessibility. I was ordering online. That also played into effect when the pandemic started because I was also reading stories about how the chronic illness community and the visually impaired community were struggling with those same issues. Local businesses were also struggling too with those issues of lower incomes, etc.

I wanted to find some way to make a difference. I took on a challenge of Instagram. I’d never really been on social media before. I’m a really shy person, and I wanted to make that accessible, as accessible as possible. Instagram is a visual media. How do you make that accessible? Businesses are on Instagram; they’re showing their products. How do you get the visually impaired community involved together? I love to shop.

I would support small businesses and shop, and then I would tag them, and then I would create the alt text and image descriptions and I would start building it that way. Then as Reels became big, then I would try to find innovative ways to make Reels more accessible and add audio descriptions. It kind of just kept going like that. I created this community that was bringing the visually impaired community together and the sighted community together. We were learning together how to make this more accessible. I had even small brands and companies wanting to sit down and ask me how they could make their platforms more accessible. It was just this ripple effect that started.

Jillian Comstock:

Wow. That’s absolutely remarkable, your introduction to all of that. Like you mentioned before, you said that you are a TEDx speaker, which by the way, I watched your TED Talk and everyone watching right now needs to go check out your TED Talk. You convey such a powerful message and it’s so captivating and inspiring, and I absolutely loved it. In your TED Talk, which by the way it’s titled Blindsided, you beautifully share your story using a mirror to represent your vision, your journey, and who you are today because of it.

Now, in your TED Talk, one thing stood out to me immediately. You say, and I quote, “I may not have sight, but I have a vision,” which that in itself is so powerful and can resonate with everyone. Could you share a little bit about your vision and how you were able to make it into a reality?

Anne Mok:

Sure. My vision is to inspire a barrier-free world so that you can live your life to your full potential. I’m really passionate about creating impact and connection, but also weaving imagery through it. Because I want to be able to connect and create that impact and break those stereotypical stigmas of sight loss and what blind looks like to people, so you can create what your vision of life is. Even though I have a genetic retinal condition and I have a rare disease, it doesn’t define me. I can write my own story. They don’t have to stop me. As challenging as they are, I can find ways to make this vision of the life that I still want. Of course, it’s very, very difficult. But once can break through those, you can find your path.

Jillian Comstock:

Wow. I think you’re absolutely right. It is really difficult to break through those. Anyone, not even someone like yourself, you have a retinal condition, but anyone is kind of struggling with that idea of breaking through those barriers. You just beautifully expressed that in your TED Talk as well. My Hero 360 is all about recognizing those that have embraced life’s challenges and turned it into something powerful and hopeful for others. Can you share ways in which you have not let your own obstacles define you?

Anne Mok:

I think number 1, they say that you could either give up, you can give in, or you can just live your life beautifully. I’ve given up. There’s points where I’ve just given up. I’ve realized that isn’t serving anybody, serving me. I don’t want my kids to see me give up on life. Life is full of obstacles in so many different ways. You’re always going to be thrown curve balls. I didn’t want them for themselves to give up on life as well too.

Giving in is another thing. I realized that I need to acknowledge the pain, for sure, acknowledge the illnesses that I have, give space for them and lean into it. On those hard days, yes, they’re hard days and accept it and hold space for it instead of … I’ve realized that fighting it takes too much energy. On those hard days, I will just rest. Then on the lower pain days, that’s when I will live my best life. That’s how I’ve kind of changed my perspective on things. I’ve had to have people around me that are supportive in that. That’s really important.

It’s really about my mindset, how I’ve shifted that to really help me to keep going and just building community through social media and connections and finding community and strength in that way. That’s how I managed to get through this.

Jillian Comstock:

Wow, that is so profound. I want to shift gears a little bit and talk about social media. In the past few years, social media has become such a huge impact in everyone’s day-to-day lives. Its ability to connect people from all around the world is so monumental. You yourself have taken social media and made it a place for your community to come together and empower each other. Can you share how you have embraced social media to help advocate for yourself and others?

Anne Mok:

Before, I was never on social media. Before, I didn’t even want to show my face, for example. I realized when you are going through such a difficult time and with rare diseases and chronic illnesses, the first thing you do is you go on the internet. You are looking for anything to do with your illness, any help, any support. You are looking for people like you. You’re looking for connection. You need to find people so that you know you’re doing okay, so that you have some frame of reference that you can look towards.

It’s so isolating because no one around you understands what you’re going through. No family members, even though they’re with you 24/7, they really don’t know how you’re feeling and how you’re doing and what you’re thinking about and how you feel about the future, and what you’re grieving about your past. It’s really those that are going through it that can really empathize with you. You’re always looking for that sense of identification, that community.

That’s where social media has really benefited. I remember just hoping once I opened that door to social media, hoping I find this, that one person that has NDPH or that one person that has corneal dystrophy. I’m thinking, how are they doing? How are they managing? Are they surviving? I want to know, are they thriving? Because that’s what I want to do. I want to be able to survive, and I want to be able to thrive. Then I also want to be able to, when I get to that point, can I help someone else too going through that so that they don’t feel alone too? That worst feeling is that feeling of alone. Yeah, so that’s where I feel like social media is so vital to our mental health.

Jillian Comstock:

I completely agree. You definitely reflect the good side of social media. I think everyone can agree that social media can be a super scary place and it takes a certain level of vulnerability to put yourself out there and make a social impact. I just want to take this time to applaud you on all that you do for creating space for your followers and anyone else encountering your profile.

Anne Mok:

Thank you.

Jillian Comstock:

Circling back to your TED Talk, you touched upon the challenges you faced when grappling with the idea of incorporating a white cane into your life, primarily due to the associated stigma. This is very important to talk about as I’m sure many people out there are navigating this for the first time. How do you combat the stigmas and what would your advice be to others going through a similar experience?

Anne Mok:

The stigmas are probably the biggest barrier to many people having to start using a white cane. That is a huge, huge roadblock. According to the Perkins School for the Blind, only 2% of those who are visually impaired use the white cane.

Another 2% use a guide dog, and the rest who are visually impaired use the usable vision that they have. Many sighted people will not come across a visually impaired person that is obviously visually impaired. Even for me growing up in a very urban city, I didn’t come across people with a white cane. I’d see a person with the odd guide dog, but you just don’t know how to interact or anything like that. All you know is what you see on movies or what you might read in a book and you don’t really know what blind looks like.

It wasn’t until even educating myself further that you realize that blindness is a spectrum. It’s not completely black and white. That’s something for me to learn as well. As I was needing to use a white cane, I was in the middle of working in a job. I hadn’t even told my employers that I was struggling with vision loss. Bringing out a white cane, I was just like, I don’t know what to do. I would hide my white cane in my bag because I was like, I could still do my job, but I need a white cane. I just couldn’t process that. I’m sure nobody else could process that because you think it’s like a black and white thing.

On the outside, I don’t look like I’m blind. It’s so hard. Then you think, are you a fraud because you’re using the white cane? There’s so many things that go through your mind and then you can also wear glasses and use a white cane. Nothing makes sense. It’s really a struggle. It wasn’t until the pandemic that I wore a mask and I wasn’t working at the time anymore that I felt more confident to use a white cane. But it takes so much. It’s very, very stressful.

That’s why I think it’s so important that I’m on social media and just getting out there and educating and going out as much as possible and being representative, going to Walmart, going to the grocery store, going wherever to use my cane and educate and look people in the eye and say, “Yep, I can see you and still use my cane. I can see, but I can’t see,” because every interaction helps. Every conversation helps to build that education and awareness.

Most of the time people are like, “Wow, I didn’t know that. If I just knew that, great.” It’s again, that ripple effect again, just spreading that education and awareness. As I said, most people won’t come across, but whatever I can do to share and get myself out there, I think it helps.

Jillian Comstock:

Yeah, absolutely. I love your outlook on it and you were such a role model for everyone out there just because like you said, doing those reps, going to Walmart, getting yourself out there, that’s really tough to do. The fact that you’re able to do that is so profound and significant to you and your brand especially. For my last and final question, what would you tell your younger self knowing what you know now?

Anne Mok:

I was an extremely shy child very much because I struggled so much with my vision and I was afraid of someone finding out that I was struggling. I didn’t know it was really because of my vision. I didn’t think that I was smart enough or lived up to the expectations. I would tell my younger self that all those things that you think are differences are actually your superpowers. They are what make you special and what make you unique.

You’re going to find out that they’re the things that open doors for you, and that voice that you have is what’s going to be able to give you authenticity and give you what you need to share what’s important to the world and give you a voice that will share something very important in the future. Because I was so quiet and shy, I always was very attentive and listened and that has become a very important quality. I’m very grateful for that too because listening and leaning into people and their stories has helped for me to be more open-minded and to really understand people better and have an open-mindedness about different perspectives and not to be a narrow focus.

I think that has helped me a lot to be the person that I am today and embracing who I am, embracing my disabilities, embracing all my illnesses has truly made me who I am today and a much better person. I’m actually very grateful for that. I wouldn’t be who I am today without all of that.

Jillian Comstock:

Wow, that’s amazing. Thank you, Anne, for your authenticity and vulnerability today. I’ve had the greatest pleasure of getting to share your story today. You are truly a hero. Here at My Hero 360, we value and appreciate the impact you have made on the world, so thank you.

Anne Mok:

Thank you so much.

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Connect with Anne Mok:

• Instagram: @purposeinview
• TikTok: @purposeinview Website: purposeinview.com

About My Hero 360:

At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world.

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