Joeita Gupta:
I'm Joeita Gupta. And this is The Pulse. The personal is political. This is a defining slogan of second-wave feminism. It expresses a common belief held by feminists that the personal experiences of women are determined by their political situation and their gendered reality. It's also a slogan that many people with disabilities have adopted, however unwittingly, whether it's through a written memoir or via a YouTube channel. People with disabilities are relating their personal lived experiences and by sharing with a wider audience, simultaneously redefining the political terrain. It would be a mistake to assume that only lobbyists or political actors change the world. Often it's ordinary people living ordinary lives who are genuine change makers. In having the courage to share the messy, beautiful, and sometimes vulnerable moments, which define what it means to be disabled. They are changing the world sometimes one YouTube video at a time. Today we discuss autobiography as disability advocacy. It's time to put your finger on the pulse.
Joeita Gupta:
Hello and welcome to The Pulse on AMI audio. I'm Joeita Gupta. Joining you today from a boardroom in the Accessible Media offices in downtown Toronto. I am wearing a canary yellow V-neck sweater. It's fairly loose-fitting, and I am seated against a white backdrop. I have black hair, which is pulled back, and I am a brown woman, and so my skin is slightly tan. My guest today is Sarah Patel. Sarah is the creator of the Thinking in Colour, a YouTube channel, and on that channel Sarah discusses what it means to be low vision and Muslim. Sarah, welcome to the Pulse. It's really nice to have this opportunity to speak to you.
Sarah Patel:
Thank you so much Joeita for having me on The Pulse. I will give a description or to the best of my ability to give a description of what I'm wearing. I'm wearing a black t-shirt. I'm also wearing a pink hijab, a scarf that is tied in a turban style, and I have a dark background behind me. I identify as Muslim, so I am medium, I guess tone. Yeah,
Joeita Gupta:
It's interesting. I always find it a little challenging to do the descriptions, but I often think about how useful it is to provide that for people who are visually impaired. Is that something you thought about as well when you launched your YouTube channel, which is Thinking In Colour?
Sarah Patel:
Absolutely. I think I would say in the low vision community, because everyone, my name is a very, I guess, westernized name. So when at first impression or when I introduce myself, nobody knows what my background is till we get later into conversation and then I identify as being a woman of colour or a Muslim woman until that point. Or I've also gone several occasional meetings, several people over and over and them not knowing till it's come out in conversation and I have said it. So yes, to have the YouTube channel, to give a bit of a platform where I can really show who I am and give the education as someone with vision loss and wearing a hijab.
Joeita Gupta:
Why is it called Thinking In Colour? I was intrigued by the name and I wanted to ask you why Thinking In Colour?
Sarah Patel:
Yeah, so it took me a long time to kind of come up with this name, but when I think of colours or what, Fall's coming up, so everyone is so mesmerized by the Fall colours, but someone that is low vision or blind, they can't quite see the colours. And colours not only represent what you see, but is what you feel, what you think of. It can be emotions, it can be so many things. So I have left it up to the viewers of how they interpret thinking in colour, because thinking in colour to me can mean so many different things, not just of what you visually are seeing out there and expressing yourself.
Joeita Gupta:
The channel has such a wide range of content. Can you give us a bit of an idea of what all would we'd find if we were to click on your channel and start to watch?
Sarah Patel:
Yes, for sure. So it started off very specific to one area of topic, and from there I said I just couldn't stick to that. There was just so much I wanted to share and so much I wanted to put out there. And so it covers what covers me doing some travel, living independently, my journey with navigating the healthcare system, some videos of my cat. So I've kind of included everything of myself that I would like to share with viewers for them to see. I think a lot of times, especially coming from a Muslim background, a lot of times women are sheltered or are not really allowed to put themselves out there. And especially if you have a disability, you really are not welcomed in society or really not looked up to as a whole person. You're just kind of looked at, "Oh, she's a person with a disability." So I really wanted to take this opportunity to show and give other individuals that are from ethnic backgrounds that you can live a full independent life. There's so much more to it than just your disability.
Joeita Gupta:
That's true. And at least in my family, and I'm from India and have a South Asian background, and one of the things that I would often get told is if you don't use the vision that you have, then you're going to lose it.
Sarah Patel:
Yes.
Joeita Gupta:
As though being blind is the absolute worst thing that could possibly happen to you. So no matter how much you have to squint, no matter how large the print needs to be, no matter how much you have to stare through a magnifier, keep trying to see. What kind of reception did you get from friends and family when you said that I am going to be putting my story out there on YouTube?
Sarah Patel:
I got all-around support. For me, it was a bit different I would say, just going back a bit, growing up as well. My mom wanted me to have the most independent life as possible. And so when she was told that I would be losing all my vision in my late twenties or early teens and the suggested course was to learn braille, I learned braille because it was something that once I learned braille, it's a skill that you'll never forget. But at the same time, and even using the white cane, I had my own struggles with the white cane, but my mom always encourage for me to use the white cane.
Joeita Gupta:
Yeah, it's interesting because I had such a different experience. Never learned to read braille. I actually tried to read braille when I came to Canada and I was about 17 or 18 and I think you kind of missed the boat in terms of ever being very fluent with braille. So to be honest with you, Sarah, the only braille I can read is just enough to read the elevator buttons. And there's a coffee machine at AMI, which has a lot of braille on it. I just need to know how to make my latte. So that's the extent of my braille.
Sarah Patel:
Your latte.
Joeita Gupta:
Tell me a little bit about how the YouTube channel that you're working on then relates back to some of the advocacy work that you're doing. IRL, in real life.
Sarah Patel:
So I've been on with [inaudible 00:09:04] for quite some time sitting on their advocacy and ambassador board. I joined True Faces, which is another organization and being on the ambassador board and just, I think being in high school, one thing I've learned is just learn to advocate for myself and other people and really share what I know and the knowledge that I have with others.
Sarah Patel:
And to be honest, I always wanted to start a podcast or something, just sharing my lived experiences, bringing on other people that I know to talk about their experiences, educating the public just about certain things on myths about blindness and using the white cane. Just really trying to get as much as advocacy and education out there as possible. And unfortunately I just never got around to it or I was a bit like, "I don't know. Should I do this, should I not?" And I'll say, what really pushed me to do it was when I got into a motor vehicle accident and I was like, "You know what? I really want to share how I'm navigating the healthcare system in COVID times." And to let people know what are the challenges and some of the struggles you faced, not only with this pandemic that was going on that everyone was trying to figure out how to deal with, but also the healthcare system and having a disability on top of that.
Joeita Gupta:
I'm sorry to hear about the accident, Sarah, are you doing OK now?
Sarah Patel:
I'm doing better, yes. Thank you.
Joeita Gupta:
And so do you mind telling us what happened to you?
Sarah Patel:
Yes. So I was on my way to work of December 2020 and we were rolling up to a red light and we were rear-ended three times by two separate vehicles. I was in an accessible minivan, the wheel tran, so it was in a wheel transports, it was a van, it was an accessible van. And unfortunately, I was kind of in that vehicle for about two hours till I got taken out.
Sarah Patel:
I walked away at that time with no prominent injuries except for just not feeling quite well or feeling nauseous and stuff like that. And when I went to the ER was confirmed that I did have a concussion, but no broken bones. But it later on throughout the days, we realized that there was a lot of soft tissue injury, whiplash, I ended up tearing my rotator cuff. So it definitely impacted my vision, which was quite scary because until then, my vision was quite stable for what I have. And to realize, all of a sudden, you cannot see quite well as you used to, along with you're feeling all these other aches and pains and it was quite challenging and it was quite difficult to not know if the vision that I lost, if it's going to come back, if it's just concussion related or if it's something that it just happened that I'm just all of a sudden drastically losing vision.
Joeita Gupta:
It sneaks up on you too. Instead, you don't know how you're going to manage the things that you used to always do.
Sarah Patel:
Exactly. I do rely a lot on my sight. Like you said before, I like to use what I have, not in terms of not losing it, but also it's a way to keep your eyes stimulated and working. So I definitely do, yes, rely a lot on my vision and whatever vision I have. So it was quite hard to digest and not know what the outcomes was going to be. But yeah.
Joeita Gupta:
What happened to you when you were at the scene of the accident? What sort of a response did you get from the paramedics? Were they the ones to take you to the emergency room? Were to help you navigate? Because even without the complication of COVID, those faces can be very challenging [inaudible 00:13:41].
Sarah Patel:
Unfortunately, no. I did not get a good response from the paramedics. I was quite shocked. I've unfortunately had to have paramedics come attend to me in the past for other health reasons and things like that. So I know they can be quite helpful and nice. And when I told them like, "I don't feel well, I feel nauseous. I can't see well. My vision is a bit blurry then what my normal vision is." And their response is, "Well, you can go about your day and if your symptoms get any worse, you can go to the ER."
Sarah Patel:
So I ended up going to work, since I was a lot closer to work and then called my parents and had them come pick me up and take me then to the ER. And again, at the er they don't let anybody come in because of COVID. So unless you know are not ill or you don't have to be attended to, you're not allowed in. So again, it was the advocacy piece of well, and they didn't really quite get, "Well, she's partially said, so she can still see some, so she can still comment in on her own." And it was to a point where mom's like, "No. You know what? She's blind. She can't see. She can barely walk by herself. She needs a support person." And sometimes you just have to pull the last card possible to get the help that you need.
Joeita Gupta:
Yeah. Yeah, it sounds like it was a really bad experience and it's one of the things that really prompted you to start to share your story on YouTube, but you've not just talked about your experience with the healthcare system, you've also delved into what it is to live with your disability. What are some of the other episodes and some of the other ideas and topics that you've touched on in your YouTube channel?
Sarah Patel:
Sure. So we did one episode of myths of things that can eat, that potentially could cure your eyesight. So coming from an Asian background, I went to all the hemopathic doctors and other doctors and tried all these home remedies of potentially getting the eyesight back. So carrots are good for you, but eating carrots, yes, you need your fruits and vegetables-
Joeita Gupta:
It ain't going to do it.
Sarah Patel:
Ain't going to do it. Talking about having mushroom juice put into our eyes. So we have some episodes of that. I also am a huge advocate of mental health, having a background in mental health. So coming again, from a Muslim background, mental health is something that is not talked about and I think in a lot of different cultures and backgrounds is really not talked about. So I really wanted to again, share my experience and advocate for individuals that are out there that are struggling with any mental health to reach out.
Sarah Patel:
There are support systems, there are help out there. So doing little videos on loving selves or taking some time out to self care. Self care is very important. Not a lot of times we forget to take time off for ourselves for self care. So think about what you like to do and put that time aside slowly starting off once a week and gradually incorporating it into your schedules every day. And then I did a trip to Calgary, so kind of blogging as much as I can about that. Again, I went on my own with a bunch of friends. So documenting, yes, as a person with a disability and from a Muslim background, living independently, traveling independently, going out, exploring, seeing new people, meeting new people.
Joeita Gupta:
And so what sort of reception have you gotten from the general public to your YouTube? Do people recognize you and say, "Oh my God, I saw you on YouTube?"
Sarah Patel:
No, so I don't know quite there yet.
Joeita Gupta:
Soon, soon.
Sarah Patel:
But I've gotten a great response for the most part. Obviously, with social media, there's always going to be some negative response that you will get. I think on one of the videos when I just talked about different types of blindness or different stigmas about blindness and things like that, a bit of negative, but that's to be expected. But for the most part, it's been a pretty good response, really positive, even on Instagram. So I do a lot more posts on Instagram, just sharing stories or just advocacy, things we're sharing when there're special days, guide dog. So just bringing a lot of awareness and so the response even on there, has been quite great.
Joeita Gupta:
Oh, that's amazing. What are you planning for future instalments of Thinking In Colour?
Sarah Patel:
So a future install, there is a lot I want to do, unfortunately I did have to take a step back and a break just and focus on my health and there's been a lot of life changes for me actually, as well. So definitely sharing some of the life changes that I've been going through. For example, moving out on my own, that's a big one and kind of navigating that. There is also looking into the future, potentially becoming a mother. So there is quite a lot more content that I want to put out there and share and just talk about. And yeah, that'll be yes.
Joeita Gupta:
Your life. Your life. I mean you're living your life and that's what you're talking about.
Sarah Patel:
And also bringing in other people that have stories and things to share. I know I had someone on that spoke about navigating and getting the first shot of the COVID vaccine as living with the disability and it was quite interesting to hear their story.
Joeita Gupta:
Oh no, it is, it's one of the nice things about being on YouTube or having your own channel is just the ability to narrate your personal experience to a wider audience. And you hope that that personal experience will resonate with people in a way that they'll start to realize that your disability isn't your defining factor or the colour of your skin isn't your defining factor. It's a part of who you are, but it's not all of who you are.
Sarah Patel:
Exactly.
Joeita Gupta:
What are you hoping that people will think about disability issues and think about women with disabilities, in particular, Muslim women after they've encountered your YouTube channel? What kind of change are you hoping to see in the world?
Sarah Patel:
So I think, number one, just listening and interpreting and even if they gain a little bit from that and are able to apply or if I can encourage them to make that step that they want to do in their life and for whatever reason, if they're scared or afraid, or don't really want to take the risk of doing it. One thing, I guess learning is, the few people that I've worked with coming from other backgrounds, a lot of times they're scared or the parents are very sheltering of their kids. And a lot of times it's I'm sitting there instead of getting to know them on at a friend level, let's just say I'm doing more of the mentoring and saying, "No, no, it's okay. You know, you can live a perfectly independent life. Let your child live that perfect independent life. Give them the freedom, give them the independence to learn to live on by themselves, because you're not always going to be around."
Sarah Patel:
So I think for me, for any of them that are watching my videos, whether it's a parent or individual with a disability, just getting some sort of inspiration and saying, "Well, you know what? If she can do it? Why can't I?" Because I think a lot of us with disabilities, we listen to podcast or look at videos, watch videos, and read social media and we look like, "Oh, well that person did it. So why can't I?" I know I have definitely had done that in my life. And I think the biggest thing for me is mental health. There's so much struggle with mental health and invisible disabilities and really be able to accept it and come to that point of acceptance. I think I've even done a video of me coming to terms with my own disability and how it's changed my perspective and my view of how I look at myself differently now as well. Right?
Joeita Gupta:
Yeah, no, I like that video. I really enjoyed watching it and it kind of made me think about how I have a very strange relationship and in some ways with my vision loss. In some ways I accept it and in other ways I don't. So, that's another conversation. Just before I let you go, I have to ask you, we met through the Trailblazers Tandem Cycling Club in Toronto. It's a great opportunity if you're visually impaired, to get on the back of a bike and go cycling. So Sarah, have you had a chance to go cycling at all this summer or did that not feel [inaudible 00:23:31]?
Sarah Patel:
Yeah. I did. Yes. I actually did their group ride of the Niagara on the Lake, which was my first group ride of the season, which was, it was wonderful. So yeah, I've been part of Trailblazers for a few years now, and I've also been doing downhill skiing with the Toronto Ski Hawks. So if anyone's interested, nice to see you now out on the hills, as you know, Fall's approaching and Winter's approaching.
Joeita Gupta:
I applaud your stamina. I chickened out when I saw the Niagara Group, right? I said, "I don't think I can manage that. But maybe next year." Sarah, thank you so much for speaking to me today. It was a pleasure.
Sarah Patel:
Thank you so much for having me on Joeita.
Joeita Gupta:
Sara Patel is the creator of the Thinking In Colour YouTube channel where she talks about her experiences being low vision and Muslim. You can, of course, check that out on YouTube. That's all the time we have for our show today. Thanks a lot for listening. Our technical producer is Marc Aflalo. Our videographers today are Ted Cooper and Matthew McGurk. And Andy Frank is the manager for AMI Audio. If you have any feedback, you can leave your comments at feedback@ami.ca. You can also find us on Twitter at ami audio, use the hashtag pulse ami. And finally, if you are interested, you can also subscribe to the podcast, which is available on your favorite podcast platform. And if you're joining us over YouTube, don't forget to subscribe and leave comment down below so we can always interact with you that way as well. Thanks a lot for listening. I've been your host Joeita Gupta. Enjoy the rest of your day.
