Varun
Hello, everyone, my name is Varun, I am one of the co presidents of the McMaster Hearing Society.
Dana
Hi everyone, my name is Dana and I am the other co-president of the McMaster Hearing Society.
Varun
And we are so excited to bring you guys this new project that we started this year called Hear Us Out interview series, where we interview individuals in the D/deaf and Hard of Hearing community, audiologists, very famous or local advocates for accessibility, and the list goes on and on to bring you perspectives that we think are incredibly important, but are not given a platform to voice them readily and with accessibility. So we're here to bring you that content right through this podcast.
So maybe before we get into getting to introducing our guests today, maybe we'll give you an introduction as to who we are. So, we're McMaster Hearing Society and generally, we're an advocacy-based MSU ratified club where we give a platform to bring a lot of these concerns to light.
We're very information based. We try to not only communicate with students as to how they can become allies and provide actionable steps to them. But we also work with different McMaster entities like the Student Accessibility Services, and we're currently working with library services, faculty and even high, high up individuals in the McMaster Students Union to bring about policy changes that hopefully will not only benefit the Hard of Hearing and D/deaf community but all students in general. I think Dana will now go into talking about our goals and intentions with this podcast specifically.
Dana
Yeah, for sure. So, as Varun mentioned, we are an advocacy-based MSU ratified club, and what that means is, we're really trying to hold advocacy at the center of everything that we do. And, one of our new and ambitious initiatives is this podcast series. In the past, we used to hold the Hear Us Out panel event, which was a really great event where different professionals and people that are in the D/deaf and Hard of Hearing community used to come out as our panel guests, and students from the wide McMaster community could ask questions, learn more about the diversity of perspectives that work with the community and are in the community.
So unfortunately, this year with COVID, we weren't able to do that, but in a really fortunate way, we were able to adapt it through this podcast series. So, our intention is really to again, reach out to the wide community, those that are in the D/deaf and Hard of Hearing community and work with the community, bring them on into our podcasts like today and just listen to their stories, their experiences, learn from them and take all of that information and hopefully apply it to things that we can do as students, to bring on a more inclusive McMaster community in general. That's what I have to say about them. And Varun, if you have anything else to add.
Varun
Yeah, I think it's also important to note that we are a grassroots sort of team. So, we're learning and growing continuously. And we, more than anything, we would love to hear you, and the listener’s voice come to light. So, one: if you want to be a part of our podcast, if you have ideas for our podcast, topics that you would like us to cover, issues that you would also like to bring to light. Please feel free to email our McMaster email or even contact us through any of any one of our social media platforms. We also have a newly developed website, so please feel free to add your comments on there as well. So without further ado, I think now is a great time to introduce our very, very first guest and a good friend of ours, Madison Law.
Madi
Hello, my name is Madison, but I go by Madi and I am a first year representative with the MHS and I am also Hard of Hearing. So, I have bilateral cochlear implants. I got my first one in 2018 and recently my second one in 2020. I'm the first guest for this interview series. I'm so excited for this series. We have a lot of interesting speakers and people from all different viewpoints that can share their knowledge.
Varun
That's wonderful. When this project was first conceived, we were looking for individuals who were interested in speaking and Madi was incredibly enthusiastic about it. So, we're super, super grateful to have you here, Madi. So, as you mentioned to the listeners, you are part of the Hard of Hearing community. So, before we get into the nitty gritty, would you like to tell us a little bit about your experience as someone who is Hard of Hearing? How you, sort of, navigate the world? What kind of challenges, you face in general?
Madi
So to start off, I just want to say that I don't speak for all D/deaf or Hard of Hearing individuals. This is my personal experience and my personal viewpoints and the viewpoints of my family, because I'm not fully immersed in the D/deaf and Hard of Hearing community. So some of the opinions that I have and my family has, are quote unquote, controversial. But that's the viewpoint that we come from.
So I was born hearing, but I've had hearing problems and issues ever since I can remember. I've been going to the SickKids Hospital in Toronto since I was born for various reasons, but mostly ear issues. I can't remember exactly when I started to lose my hearing. But I do remember in Grade 4, I told my teacher and I pulled him aside and I said, “Hey, I can't hear that well. You might have to speak up.” So that's, I think the earliest that I can remember that my hearing was starting to decrease and my hearing was pretty good in my left ear until a couple years ago, and then it kind of just went downhill. Same with my right ear. So, it's not like a thing that I was born with. I have hearing issues on both sides of my family. It’s kind of on my dad’s side. I have a cousin who's Hard of Hearing and wears hearing aids and I recently learned that there was an uncle of my dad’s who also wore hearing aids and was Hard of Hearing. And then on my mom's side, some of her dad's siblings are Deaf. So it's kind of just like a lucky or unlucky draw. Kind of like a Russian roulette of who's going to have hearing issues. I don't think there's any like, “real” cause. That being said, my immediate family are all hearing, apart from my dad, who has some hearing issues in his right ear, but he identifies as hearing.
So, I started off with a regular hearing aid when I was in grade eight, and the school that I was in was kind of small. I was the only person who had a hearing aid within 10 years of my grade. So I hated wearing it because it separated me from the general population of students, which, for somebody who has anxiety, is already very stressful. So when I got it, it helped. But because of my specific ear issues, it soon did not and would clog with wax and would not work. And so, it was just very uncomfortable for me to wear. So I decided, I don't want to wear this. I'm doing Ok. I can mostly hear what's going on around me. Then, I received a temporary BAHA, which is a Bone Anchored Hearing Aid. So I had a little kind of headband that you connected the device to and it sat right on the bone.
So, that was my first experience of what a cochlear is like. Again, I didn't really want to wear that one. It was in grade nine when I received that and it helped. But again, grade nine, starting high school, I don't really want to be the kid who has to wear something that is so out there and so unique. I remember the people who would come to talk to me and see how I was doing, like the hearing services. They'd be like, “Oh, wearing a hearing aid. It’s like having glasses,” which it's not. A lot of people wear glasses, compared to not a lot of people wear hearing aids. Whenever I see people who are in public who wear hearing aids, I get so excited because, “Oh my God, there's someone like me out there,” because I'm not surrounded by people every day who wear hearing aids or are D/deaf or Hard of Hearing.
So, I also remember one experience. I was in class when I pulled out my hearing aid on the band and then somebody who was sitting next to me, kind of asked me, like, “Oh, what is that?” And I'm like, “Oh, it’s a hearing aid.” And they're like, “Oh, cool.”
So that was kind of like what I was trying to avoid on a daily basis was that, “Oh, OK”, and then that awkward situation and that awkward kind of like you have a hearing aid, that's kind of weird. The summer between, I think it was either grade 9 and grade 10 or grade 10 and grade 11, I realized that I had to wear the hearing aid because my hearing was going downhill rapidly, and I was like, “OK, this is something that I have to wear, because without it, I cannot hear and I don't like not hearing.” So, I remember the exact moment when I realized that I had to wear it. That was a very hard thing to come to realizing, but something that I had to do. And then when I did it, and I went to school and people saw it on my head, they kind of just thought that it was an accessory to the headband that I was wearing. They didn't really know what it was, they didn't really care. And I realized, “Wow, I’m fine” I have a hearing aid and people don't really care. It's kind of just a thing that's on my head. And then in 2018, I had surgery on my right side for a cochlear implant. So I received a temporary device, now I have my permanent device. But as soon as I received the first device, my world changed. I could hear background noises that I couldn't hear before. I could hear my parents from across the house. They didn't have to yell anymore, which was great. I mean, I had to speak up so that my dad could hear me but my mom didn't have to yell at me anymore. And I could hear sounds. I could hear everything. I guess ambient noise, I could hear that and it is life changing for me because I can't hear that on my own. And without that background noise, like even noises such as an air conditioner or a fan or a heater or any noise that you have in your room, that kind of just sounds like a quiet hum. I can't hear that. So it makes my world very silent.
I know a lot of people like silence. But when you're constantly living in complete silence, it gets a little isolating and I hate that. So, having that device made my world not silent anymore. So, I could hear everything that was around me and that was also difficult to adjust to the device that wasn't on a headband anymore. Like, I got an implant, so I have a mental kind of blob type thing in my head. Just kind of adjusting to that and, since my right side is so much worse than my left side, it balanced it out. I could hear everything that was around me, and I wasn't just relying on my left side, “Oh, could you repeat that?” It was like “Ok, I can hear you. This sound’s going like this, and I can hear.”
So then, in the summer of 2020, I received my cochlear device of the newest one. So, it's this one. This is the newest model. It's a lot smaller. It's more compact. I like it. It streams sound from my phone, so I can be listening to music through my device and people won't even hear it. It's like, I've got a whole radio connected to my head. And then in the end of October 2020, I had my second surgery for a cochlear implant. Because I was kind of running out of time to have it done at SickKids, I got it done. I don't always wear it on my left side but I have it there, just in case.
But for me, the cochlear implant was crucial to my survival, and the world that I live in, and for schooling. I didn't have the option to be Hard of Hearing, borderline deaf, and not have a hearing device to the world that I live in, the hearing world that I live in, and the place that I was at and the place that I'm at now.
Varun
I think that story is incredible for so many reasons, but what I think it gives me is perspective. Because like you mentioned, how even getting your first hearing implants, you still felt some kind of anxiety with it, because you felt sort of like an outsider and it was a different experience for you, that wasn't comparable to other people. But hearing your story and how that sort of progressed from one implant, like more complicated and more accessible, like hearing devices, I can see the smile on your face, and how much it has changed your life.
I'm curious to know your insights on this because as hearing individuals we don't quite understand the nuances. So, what insight could you give the listeners who may think like, “Oh, I know a Hard of Hearing or D/deaf individual who didn't have these surgeries or didn’t opt to get hearing devices.” Even though your story is sort of highlighting how freeing or liberating that can feel. What insight could you provide for that perspective?
Madi
So, or me, having a device was the best option. I remember even driving to school and having that conversation with my dad being like, “Oh, I could get the surgery, I'm really scared because it is surgery. But this time, yes, I'm going to get this surgery, I'm going to get the device.”
For me, it works best because my immediate family that I live with does not use sign. So, use sign language. Both my parents and my sister are hearing, my school is hearing, everything that I do is all hearing. The only connections, other than myself being part of the D/deaf and
Hard of Hearing community, I have to the community are those individuals and family members who are in Nova Scotia. So, I'm not immersed in a signing and Deaf world. For people, I think that are D/deaf and Hard of Hearing, who've grown up that way, and who are immersed, and definitely younger, I think it's easier for them to exist without a device, because there's more resources for younger people. But by the time that I got my implant, I was in grade 10. So I've done most of my schooling with almost no knowledge of sign language. For me to live without it, I'd have to become fluent in sign language or learn a large majority of it. My parents would have to learn a large majority of it. My sister would have to learn a large majority of it. And, we kind of didn't have the time to do that. And I don't think that my school and my community are equipped to deal with someone who is completely D/deaf or Hard of Hearing who requires an interpreter for things.
So, I remember having the conversation with my dad saying “I didn't really have a choice to not get a device.” And I asked him why, and if there was an option for me to not have a device. If I was born D/deaf or Hard of Hearing, and straight off the bat, if I had kind of those challenges, he still said that he’d push for the cochlear device, which I understand. A lot of people might disagree and think that it'd be better for me to grow up in a D/deaf or Hard of Hearing world. But from my family's point of view, they, and understandably, for them would be easier, and more beneficial for me to get a device and learn, if I could, to speak. Because of where we are, with not so many resources available in our immediate area, none of my immediate family or the people that I live with knowing sign language, being in the community not knowing basically anything about it. Even when I was getting my hearing aid and my cochlear implant, it was kind of like, my parents knew what a hearing aid was, like a regular standard hearing aid, because a lot of older people have them. But they didn't know what a cochlear implant was. I didn't know what a cochlear implant was. So when we talked to the doctors, they're like, “Oh yeah, there's this option where you can get this device. It's basically a Bone Anchored Hearing Aid so instead of going in your ear. It goes on your skull and kind of uses the vibrations of your skull. So what it does is replicates what happens in your inner ear, with your eardrum and the bones there and does this thing, and does it with your skull instead.” They didn't know that. I didn't know that. Kind of just like, “Oh, a hearing aid is your only option.” Until we opened up.
But my family, I think, and especially I, would have benefited the most from growing up and getting the device. But I do understand why there are people who don't want their children to get the device or think that it's better to grow up in a D/deaf and Hard of Hearing world. And I think that both are good options, but I think it really depends on where you are and what your family is like. If a parent is D/deaf or Hard of Hearing and they know sign language and then they have all these resources and have access to these schools and stuff like that, I think it's a lot easier for the child if they are D/deaf and Hard of Hearing to grow up in that. But it's a lot more difficult to grow up with parents who did school “regularly”, who went to a hearing school, who have been hearing and had hearing activities, and never really had any contact, or even been immersed in the D/deaf and Hard of Hearing world.
Varun
I feel like there's just so many subtle nuances that like no one could ever be aware of, unless you're in that situation. You mentioned so many things that I think gave me some new insights, like availability of resources, and what resources are available to your parents, how your schooling could also affect that decision. I don't want to give a one liner sort of answer, but I think to those listeners who had this question in mind, I think it's important to realize that every individual situation, even though they're in the community can differ so drastically. There are so many external influences and internal dialogue that they still may be working on or that may have influenced their decision. And I also realize, I think Madi, you and Dana and I had sort of had this conversation earlier on in the year when you're talking about how individuals in the community don't see their Hard of Hearing or deafness as disability. It's sort of a culture on its own. So, I can see how parents may decide like what I want for my child is to embrace themselves, to not look down upon their experience but to celebrate it. Just because it's a different experience, doesn't mean it's any less than anyone else.
So, I can definitely see where that perspective is coming from. I remember reading that somewhere. This article that I'm referring to coincides with your experience about feeling connected to your community and what I mean about community is the people around you, whether they're deaf or hearing, that feeling of being different, sort of that imposter syndrome. I can see how children who are forced to, you know, have to get these devices may feel on the fence with their own identities, not knowing whether they're Hard of Hearing, or how to navigate both of these different identities. So, I can see how parents might decide, “Hey, you know what, it's not only good to embrace who you are in your experience but celebrate that and to share your voice, however you feel comfortable.” So I can definitely see where that's coming from. So, thank you for sharing that.
Dana
I also just wanted to jump in and say, you know, I can speak for myself and Varun and everyone who's listening, and just say like thank you for being able to share your hearing journey with us today.
And I think just listening to you, it's sort of creating a moment of self reflection for me. Just listening to your experience and comparing it with mine and thinking about the really important topics that we're going to be talking about today, and I just want to say, it seems that you also are doing a little bit of self reflection on your own journey as well, because hearing you talk about your experiences growing up, your experiences getting your first cochlear implant, it seems, so genuine and I think it's bringing a lot of important information especially for Varun and I, and everyone listening. I'm really curious to, you know, growing up, and sort of navigating life in school as Hard of Hearing. How has the journey been in terms of trying to do some extracurricular activities, volunteering, working, any kind of recreational activities? Can you tell us more about how that experience has been for you?
Madi.
It's been very difficult. When I was younger, it was a lot easier because I, again like my hearing was better but as it started to decrease. And as I started to get these devices, I've had to adapt to doing the things that I love. For example, I love to play volleyball. But my first cochlear device, I had to wear this headband that was very uncomfortable, but I had to wear it to keep the device from falling off my head. Because if the device fell off my head and I stepped on it, my dad would be extremely mad at me (laughs). But also, I wouldn't be able to hear after that. So kind of adapting to that, then I realized that the magnet is extremely strong in my device, and that I don't have to wear the band, and that I could play volleyball without that band.
But even like that. Sports, I've done a lot of camping. I was part of Scouts for over 10 years.
And I had devices camping. So it's like, you need to be. This was mostly my dad, like I know that I have to take care of my devices but my dad really wanted to stress, you need to be extremely careful with your devices, when you're in your tent, you have to put it in a safe place so you don't lose it. I wouldn't be able to wear devices for doing certain activities, so like water activities, because I didn't want it to get wet and ruined, but that sacrificing my hearing and kind of already feeling like I'm underwater, like having that muffledness.
Activities like that, so like things that I used to do, I had to adjust myself to getting, to wearing the device with them. And it’s still kind of difficult because of the way that, especially brands like Cochlear have this Aqua+ kind of casing, that you can put on your device to wear underwater and go swimming with. But there's an issue there that the case when you close it, then it creates feedback on the device, and that is extremely annoying. So, I have yet to find a way to go swimming with a cochlear device on. I will keep trying. But, things like that. And I remember too, in 2018, I got my first job as a counsellor at a summer camp. And I had a walkie talkie, and most of the kids that I was working with were young, very, very young and we were outside. So a lot of the times, it was screaming. And that was pretty difficult to deal with especially with a device that amplifies everything that's around you. So, I would have trouble kind of hearing when somebody was like, calling me on the walkie talkies because of the loud noises that were around me.
I've also had some issues in school. I've been more outspoken about them, as I’ve become more comfortable with knowing that I am a Hard of Hearing person, and these are the accommodations that I need. It's been difficult, to kind of advocate for myself, because I don't want to be a nuisance to people, like I don't want to be a burden and say that “but the options that they have don't work for me and that I need something else”. And I don't know if those other options exist, especially in the online world, and being online, it's been kind of difficult to get the same quality of education that my peers have. In high school, it was alright. I was mostly just telling the teacher, like teachers that I saw every single day, saying that “I am Hard of Hearing. I wear a hearing aid, I can't hear you. Please speak up”. Like I saw these teachers, every single day. I sat in the same spot. And they probably had less than four classes a day. So, they should know that, okay, this person that has talked to me, that I know needs these accommodations. But it just wouldn't happen that way. There were some teachers that were a lot better than others. There were some that just, I would have to constantly remind, and I got so frustrated because for me it's annoying to say, “I can't hear you. Can you please speak up, or can you please turn this up?” Also with watching videos, I would need, like the subtitles on, and the volume to be turned up, but I didn't want to ask the teacher, and then it'd be too loud for the other students or the subtitles being too distracting for other students, which I know should not be one of my main concerns, but like, that's what it feels like. It feels like all this responsibility and pressure’s on me. And that where, it should be kind of just a general thing that happens in classrooms or spaces where if you know that somebody is D/deaf or Hard of Hearing, and requires certain accommodations, make a note, stick it to your forehead. Do something. So that you know that every single time you have this person, you have contact with this person or you have to do something with this person, you can make those accommodations, without them having to ask. It's just the general standard. It's been a challenge to transition, first of all to transition to university online, like a first year. It's so difficult. The amount of times I thought about dropping out is insane (laughs). And then adding the aspect that I can't hear well, on to that. So having to, especially with older professors, having to ask them, “Can you speak up?”, or, “I need subtitles on this.” And working with SAS, they've been great. They've been really great. They've been really, like, I really want to stress that although I will bring up issues that I have had with some of the accommodations, that they have helped out a lot. And I'm sure that they will help a lot. But there are always problems that can be fixed.
Varun
I think, one important thing to know for like listeners, is that even though individuals may opt to have, you know, hearing devices or have surgeries to improve their hearing, doesn't mean that they're void of any more challenges in the future, as Madi just articulated. There are still challenges that both the education system, and, like, teachers and faculty still have to overcome to provide that equal access to education, or for anything or anything for that matter, like Madi mentioned in high school and earlier on her education, she had all these doubts and questions in her mind. She didn't know whether it would be a burden to ask her teacher for something simple as having subtitles, right? I'm thinking back to my education system, where I would really only be thinking about school and like extracurriculars maybe and maybe some family drama. But as a child to have all these thoughts in their mind and still navigate through the education system, and compete and do all these different things. It seems insurmountable for someone as privileged as hearing individuals right like we don't have these insights. and I think that's where your story is so important to bring light to the nuances of these challenges.
So you mentioned that like you know you slowly started to advocate for yourself, and I think that's really empowering. Some people are still stuck, they have these feelings of being stuck or like alone. So I think that voice or that sentiment that you echoed, I think will definitely resonate with some of our listeners, hopefully. But you mentioned how you know in high school, the accommodations weren't that great, but after coming to university you started to see, you know, some improvements. Can you maybe speak about your transition like how did that transition look like? Did you notice any changes that were any barriers surmounted through that transition? Do you see any new barriers?
Madi
Um, well, having a meeting with a SAS coordinator definitely before the term started, I think was really helpful. Um, it was kind of like difficult to get all the paperwork together, like having to get my doctor's note and like to get the meeting with the SAS coordinator, but then whenever, when all that was worked out, It was pretty good. I can't speak to what it will be like to be in a lecture hall, and in person, because I haven't had that experience yet.
I remember planning with my SAS coordinator, that I would, that I had a plan for a lecture hall that profs would wear a microphone so that I could hear them, and stuff like that. But since it's online, there have been new challenges that have come up with additional videos, not having subtitles, or transcripts available and not being able to hear them, and then having to do an assignment on those videos and being like, I don't really know what to do, because I can't hear. And I don't know if the prof will be able to figure out how to get a transcript or subtitle for this kind of obscure video that I have to watch. And another thing is a fear of asking them for that. Because a lot of people just kind of give up when it's too difficult, or they can't find the solution, which is not great, because I should be getting the same quality of education as my peers. I pay the same amount of money, I'm regular, a regular student so I should be getting the same quality of education. And there are people who have found transcripts and subtitles who aren’t D/deaf or Hard of Hearing, useful. And I think having, like subtitles integrated in all zoom calls for people to turn on or, and then turn off. Having that option is so vital. Because, but different professors and different settings, it'll be like, there's different microphone qualities, there's different background noises, there's different accents. So it's very difficult to kind of have a baseline and say, all these people, in a virtual setting, it’s kind of difficult to say all these people are the same. And so, I won't need subtitles for any of them because they're all going to be the same because they're not. They're all in their different houses, they all have different people living in their houses, pets that bark. They might live on a busy street where there's ambulances and police officers like driving by. Or they may live in the middle of nowhere, where there's nothing around them. So kind of having the option, just generally to have subtitles on, I think is really important. And that's been a barrier is just kind of having, not having subtitles and transcript for additional videos and I even specified with my SAS coordinator for this term that professors need to have, for additional videos, subtitles and transcripts available. And there's still some videos that don't. And it's like, I even brought up this issue. And, like I know that profs have a lot of students and a lot of stuff to do. But I still should be receiving the same quality of education. And I know it's difficult to navigate the online world. I've been having a lot of difficulty, even just being like a regular person. And I appreciate everything that has been done. But there's still more that we can do, and I think that MHS has really given me the courage to bring forward, like my issues and point out problems with the systems, because it's more than one person, it's more than just me, it's, it's a whole group of people that have a bigger voice. Yeah, I'm not alone. Like, even though most of MHS are hearing individuals. You all advocate for the D/deaf and Hard of Hearing community, and are willing to learn and listen, and be the voice that a lot of D/deaf and Hard of Hearing individuals don't have.
Dana
I think something that I was thinking about as you were sharing your transition between university, high school, and university was really just reflecting on like me and university and McMaster. I think sometimes we really pride ourselves in being a family, being a small connected community, being inclusive, being supportive. These are things that we really hear associated with the McMaster community, all the time. From the day you enter the university to the day you leave. And I think when thinking about being inclusive and being supportive, we might be doing a good job but I think sometimes we need to step back and hear stories like yours, Madi, where we really need to think about how well are we doing in terms of being inclusive, in terms of the barriers that our peers in our own school community, we're all part of the same community, are facing, that we can do a lot better in and I think this is something that I was thinking about, and I hope a lot of us that are listening are thinking about it as well.
Something that you mentioned was being able to raise your concerns in that relationship that you built with SAS, I was really hoping you could tell us a little bit more about that, you know, for those that are listening that maybe don't know what SAS is, can you share a little bit about your experience with SAS and how it's been trying to raise your concerns and advocate for yourself, so far in university?
Madi
So, SAS is the Student Accessibility Services at McMaster. And they are basically the ones who handle all of the accessibility services, so for D/deaf and Hard of Hearing individuals, blind individuals, those with learning disabilities, all these different accessibility issues, so the people that I've worked with most. My coordinator is Rachel, and she's always very nice and understanding and listens to what I have to say and doesn't shut me down or say like, “Oh there's nothing we can do about that.” She's kind of like, “Okay, like what can we do to make this the best for you?” As well as Deborah, who has been working with the captioning, especially for my French class which has been a massive help, not only to me but the other students in my French class. And, like, I need those things and they work for me. There are little issues there. But SAS acts as a major resource for the university, where you can go ask questions and get help and work out a plan. Here's what like can happen and here's what you need to get the same quality of education as everybody else.
Varun
And I think this is why we started on the journey of advocating for universal accessibility. No students should be put in a position where they have to hesitate to just get like equal access to things that you're literally paying for like your tuition you're paying for these, these resources and services. And if you’re not getting the same quality as someone else, you shouldn’t be put in a position where you need to ask for it. It should already be ingrained in the system. And I don't know if it's anyone's fault but I just think it's, like, not everyone is aware of these things and I think that's why we were sort of built to, to make sure that these voices are heard. Specifically, like, you know you spoke about your perspective as a student, like those things need to be put forth in a more systematic way so that it can be implemented, or it can be included into the mandate.
But I think, like you said there's, there's still a long ways to go, but I'm but I'm happy to know that like a body such as a Student Accessibility Services or any services for that matter, at an institution is still like reaching out and like trying to do their best to to alleviate some of those challenges. Whether we have the pandemic or not, you mentioned like there were still challenges with education. How has COVID posed its own unique barriers for you?
Madi
Being more nervous than I already was to go out in public, wearing a mask, and having to talk to people, and listen to what, like, when things were more open, having to go into a store and having the person at the front, say something and me not being able to hear, and I couldn't get close to them to hear what they were saying, even with my device on because of social distancing and having a mask. And I know that, for me, I've spent a lot of time at home. So other than the online stuff, I haven't really had too much difficulty. But I know that people who rely on lip reading can no longer lip read, because the mask blocks their face, which is a good thing for the general population, but not for those who are D/deaf and Hard of Hearing. And we are almost a full year into the mandates and the lockdowns and all the different kinds of protocols. And I've seen only a few different options for people to like to have a see through screen on their mask. I've only seen like a couple of those posed. But they're not widespread and they're not pushed by the government, on the provincial, the municipal, or the federal level. They're kind of more like a one off article. I think I've only seen one of them in a store, like an online store available. I don't know where they're sold. I don't think a lot of people know about them.
So, not only for me but people who rely on lip reading, having them be widespread and a normalized thing, and having alternatives to that and I think that it’s, while it's important to keep, like the health and safety aspect, not to alienate and isolate people from living their lives, the same as everybody else. Like that should also be taken into consideration because they're part of the population. They're important. And a lot of the time the government is forgetting about them.
Dana
Yeah, thank you, Madi. I could definitely say, you know, on the news and stuff, just hearing about the different challenges specifically faced by the D/deaf and Hard of Hearing community during such already difficult and challenging times, it's been sort of a rude awakening really. I think, like, pointing out the accessibility issues. And I think you've put it, you've articulated those challenges so well for everyone that is listening today and for Varun and I as well. So, while it's really great to hear stories from the community, to hear about the challenges and the barriers, to hear about the ways that maybe we can be more inclusive, I think something that we can also take away from today and what we really want to hear from you is; for those that are not part of the D/deaf and Hard of Hearing community, for those like Varun and I, that are hearing, that maybe don't even know much about the D/deaf and Hard of Hearing community. What are some next steps that everyone listening can take away today, to not only be able to learn more about the community, but also work to actively support, and make sure that we can be as accessible and inclusive as not only a university community, but a wider community as well?
Madi
I think that for people who are hearing, knowing that, like if you know that you're going to be interacting with a D/deaf or Hard of Hearing individual at a specific time or a specific day like every Friday at 10:30, like, let's say. Then write a sticky note, put it anywhere, just to say you have a D/deaf or Hard of Hearing individual in your, for example, lecture at this time, on this day, you need to make these specific accommodations. And don't single people out. Make it a general standard that you speak a little bit louder. If somebody does disclose to you that they are D/deaf or Hard of Hearing, then don't single them out, especially for professors. I had the captioner in one of my classes. And one day the captioner kind of just showed up and the prof didn't really say anything about it. So people were confused as to what it was. And so I had to explain, kind of, what it was and what it's for, and who it's for, which I'm fine with, but not everybody might be. So like, professors, like, say, “Okay, we have a captioner in the class because somebody, because one of the students in the class are D/deaf or Hard of Hearing. So they're going to be here.” So, then it's kind of known, and people don't have to identify themselves if they don't want to. And for the general public, just like you don't have to yell, you don't have to over enunciate. You don't have to, don't get upset, and all that, especially like someone like me, somebody asks you again and again and again, like to repeat yourself, don't get frustrated with them. Just try to make them feel comfortable, and just speak a little bit louder, if you can, especially when wearing a mask, because it's very difficult to.
And if somebody discloses to you that they identify as D/deaf or Hard of Hearing and ask them what they need, to be the most comfortable and remind yourself to do those things. And then for people who are D/deaf or Hard of Hearing, you're not alone. I feel like I'm alone, living in a hearing world. But I know that I'm not. But, you're not alone, there are a lot of resources. If you look online, you can find something. The D/deaf and Hard of Hearing community is honestly, super amazing, and the things they've been able to accomplish and do are amazing.
One of my favourite resources are the Lions Foundation of Dog Guides Canada. They provide service dogs to Canadians with disabilities who qualify. So I'm currently on the waiting list for a Hearing Ear dog to help me in my life. But they have several different programs. They have a Seeing Eye for people who are blind. They have a Diabetic Alert, or Epileptic Alert, Autism Assistance, stuff like that. They're super amazing, they are nonprofit. They work solely on donations and it's extremely expensive to raise and train a dog. It’s $25 000, per dog.
But it's like, it's honestly amazing. The work that they do and they have so many different ways that you can get involved. Like you can foster a puppy and take the dog in public because it's a service dog in training. And you can donate, and they have raffles and it's amazing and then there's the Canadian Hearing Services which has their online store where you can get, like, alarm clocks and things to help you in your home that you need. But, yeah, there are resources, and you aren't alone. There's so many people out there like you.
But the D/deaf and Hard of Hearing community, even if you're not D/deaf and Hard of Hearing, I recommend checking out, like, D/deaf and Hard of Hearing individuals’ projects. Because they are astonishing and they’re heartwarming, just to see what these people can do even with the disadvantage that they have and how they make use of it.
Varun
I feel like the overlying theme that I'm hearing from you for like hearing individuals in general, is to seek to understand. Right? Not to make premature assumptions or conclusions, not to pass judgments, without knowing like that individual’s situations, their circumstances, their story. And I think that's the general principle that we can all follow to always seek to understand, but not only just to receive that information, but synthesize it and then take action moving forward. Because you mentioned like some professors will even know that you know there's a D/deaf or Hard of Hearing individual in their classroom, and may forget or may overlook certain things without really taking into consideration how crucial, even these smallest changes in like their delivery or how their material is presented can impact someone's entire educational experience. So I think that's a great take home message for all you listeners out there, I think it's certainly something that you know the MHS is trying to embrace currently and hopefully through like our steps, moving forward, we can take that sentiment and translate it into tangible action.
Dana
Yeah, and I think just to add on to what you just said, Varun. It's certainly just like being able to educate yourself and know that it's going to be a process. I think that's something that I have learned myself. I think it's important to know that you know, maybe it's not going to, maybe you're going to make a mistake. Maybe you're going to need to learn from that mistake but most of all, as long as you are being open minded to just learning more information from
good intentions to support those in the D/deaf and Hard of Hearing community and just being able again to foster that inclusivity, I do think that that's like going forward that makes me really happy just to hear about and I hope that everyone listening can hopefully take that away from us today. So thank you, Madi. We just want to say like a big, big thank you for coming out today and being able to be so open about sharing your story. I'll just speak for Varun and myself that we do really appreciate that you are so open to it, and also I think we learned so much. We're able to learn about your own personal hearing journey, a journey that only you can truly understand and truly talk about. But not only that, but also the diversity of the community itself. Learning about your transition from high school to university. How high school was like, and how university is like and hopefully you voiced advocating for your own concerns and I was excited to see what kind of change that could bring in the McMaster community, in terms of accessibility, but also hearing about some resources both in McMasters such as SAS and outside of McMaster like the Lions Foundation.
So, just a big overwhelming thank you for being such an amazing speaker and just telling us more about you as a person, and the community as well.
Varun
Absolutely, and like it takes a lot of courage to, you know, put yourself out there, and to be so vulnerable, to not only people you do know but people who you don't. Right? And, and like you said, like people who are D/deaf or Hard of Hearing, sometimes are too afraid to speak openly about their concerns. So, if people in the audience or our listeners out here are interested in contacting you and you know sharing their story with you or to get advice from you. Where can they contact you?
Madi
I'm on Facebook, I'm on Instagram. I think the best point of contact, though, would be to contact the McMaster Hearing Society, and then going through there, because MHS has a lot more resources than I do personally. Um, but I'm always open to hear about other people's stories and to learn about other people.
Varun
Thank you for that subtle plug over there, very much appreciated. But definitely, I think like guys like, whoever's listening, we’ll drop our, like, you know, social media links and email but we’ll also drop like Madi’s. Because there are certain things that you can share with our club, but I think if you want to be like really vulnerable, I think Madi would probably be the best resource and we’ll definitely drop down resources, outside of institutions that you can contact as well.
At the end of the day, like we are students helping students, but we want to make sure that our advocacy efforts are not in vain. And we want to make sure that our voices are not only accessible, but our widespread right so we could, you know, go on for hours and hours listening to Madi’s story and, like, extracting as much wisdom as we can. And hopefully, you know, we can bring Madi on again, sometime in the future and ask more specific questions. With that being said, thank you again, Madi and thank you all for listening. I definitely had a blast with this conversation and, and I'm excited to see where this project goes, moving forward.
Dana
Yeah, so with that being said, I just want to remind everyone that again, this is part of a larger series that we're holding with the McMaster Hearing Society. So, if you did like listening to Madi’s story today and you were interested to learn more about the D/deaf and Hard of Hearing community, you're going to have plenty of opportunities to do that. Please look out, a subtle plug, but look out on our social media pages to hear more about some upcoming podcast interviews that we have. So, thank you everyone.
Varun
Thank you.