The Tea on Occupational Therapy
Podcast hosted by: Ashton Forrest and Jalesa Martin
In this week's episode of Accessibili-tea, Ashton and Jalesa sit down with Sarah, an occupational therapy student here at Western, to talk about her experience being a disabled student in a health-related program. Sarah is a student living with MS (Multiple Sclerosis), and candidly opens up about the symptoms she experiences, how ableism affects her schooling, and how deeply rooted ableism is in the healthcare system: "Both before the MS diagnosis and especially after, I quickly learned how ableism is very deeply rooted within healthcare professional programs and academia, especially health care, the medical model, views disability as it's the individual's fault. It's just their problem. They need to be fixed. Stuff like that, and very negative towards disability."
Together they share insight and spill some tea on topics such as ableism, valuing the voices of those with lived experience in the healthcare field, and more. Check out the episode to learn more about Sarah's experience and to hear her recommendations for creating an accessible world where the ideas of "normalcy" and "healthy" vs. "unhealthy" are challenged.
On the next episode, Ashton and Jalesa will be chatting with a recently graduated Disability Studies student about their experience and what they learned.
Take a listen or follow along with the accessible transcript...
Hi, I'm Ashton.
Hi, I'm Jalesa.
Today we're gonna be spilling the tea on OT with our guest, Sarah, who's an occupational therapy student.
Grab your cup, sit back and get ready to sip on some hot tea.
Hi, Sarah, would you like to introduce yourself?
Sure. So, hi, I'm Sarah Brunke. I'm currently finishing my first year at Western University in the Masters of Occupational Therapy program. I completed my undergrad at Brescia here at Western in psychology.
Awesome. So I was wondering if you could just tell us a bit more about why you decided to become an occupational therapist.
Sure, so from my past experience, I actually worked with an occupational therapist, I was the client, and being able to see how they actually are able to help their clients and to re-engage in like the activities of, quote on quote, "occupations" that
clients need to do or like want to do.
It really, I don't know, at the time I was...
Sorry, this is the question I'm struggling with. At this point. I told Ashton earlier. And I was like, I'm having a hard time answering this question. So I apologize.
Hopefully, in the future, I want to be an occupational therapist, basically to be able to create opportunities for, for clients to engage in different activities.
Yeah, I think that's great. I know, for myself, I also have a chronic illness and just like working with physiotherapists and doctors has really inspired me to, to want to be in that field. And I think it's great too just to have like the lived experience of what it's like for the patients. So I was wondering if you could just tell us a bit about it, I know, you said you got treatment from an occupational therapist. So I was just wondering if you could tell us a bit more about Multiple Sclerosis. What is it , what it is, and how it affects you?
Yeah, sure. So actually, I saw an OT before I was diagnosed with Multiple Sclerosis, as I had various injuries, concussions, post-concussion, stuff like that. However, so Multiple Sclerosis is a chronic autoimmune disease. And it's of the central nervous system. So the brain, spinal cord, optic nerves, white matter in the brain.
There is no specific underlying cause that researchers have figured out yet. However, in Canada, we have one of the highest rates of MS, which I think is interesting, with like 12 people being diagnosed with MS every day. And so basically, with MS. It has to do with like, the nerves of your body. So basically,
the nerves in your body, they're covered with like an insulating layer, and like the myelin. So it's basically like rubber on a wire, and it allows the nerves to pass
signals from your brain to your body quickly. So in my body with MS, basically my immune system, it's over, overactive. And so it starts to attack the myelin, or like the cover of the wiring. I try to say, so basically, yeah, I try to describe it as like a phone charger analogy. So you know how you have your phone charger? It's all new and perfect. And then slowly over time, you know, it starts to bend and crack, and eventually, it breaks. So that's how I kind of describe when your body attacks its immune system.
Yeah, and over time, the protective coatings, like the insulation, it kind of fades away, obviously. And so the scars, multiple sclerosis needs multiple scars. So
yeah, basically, when the myelin is damaged the nerves, the nerves don't send the signals as quickly as before or if anything, you can
have no signal. And that basically, is MS in a nutshell. There's also various types of MS. So mine is called relapse remitting, meaning I can have multiple
attacks where like it gets worse for a while and can last for a while as well. However, the brain can heal and then I return, quote on quote "back to normal" or pre-injury, or sorry pre-relapse state. However, like overtime, obviously the damage accumulates and each attack tends to get worse and the insulation is stripped away. So like your phone charger, eventually it stops working.
Yeah, however, after your relapses, some individuals can return to feeling the same "normal" quote on quote, and others can like have progressive symptoms going on. And like when I think of MS, I try to explain it as like,
everyone is kind of like a snowflake because we're all...
Sorry, we're all pretty on the outside, obviously. And unique. However, we have common symptoms, but at the same time, we all have different symptoms, and no one person is going to be the same as the other.
So personally, I've experienced a few of these. Um, so fatigue is one, as well as like dizziness, balance, coordination, you can have eyesight issues, weakness in your leg, or arm wherever, numbness pins and needles, that kind of thing, chronic pain, you can have issues with memory, concentration, mobility. So yeah, it's pretty fun. There's no cure to MS at the moment, hopefully, soon enough, there will be research. But there is medications that help you manage your symptoms, reduce the number of relapses you have, and hopefully slow the progression.
So that's a lot. And I can relate to that also having a chronic illness that you may look one way on the outside, young, youthful or energetic, but feel awful on the on the inside. And even when you're moving around, people don't see the amount of pain that you're actually going through. And I'm glad that you use the snowflake reference because there's so many people with similar or the same condition. But while they do might have similar or common side effects and symptoms, how it affects them individually is completely unique. And thinking about your unique experience, how has that affected your ability to navigate the occupational therapy program? Have you faced any barriers? Are you finding things difficult? What's your experience been like?
Yeah, sure. So I know I mentioned before, before entering OT, I did have previous disabilities from injuries. So part of the challenge, like in my undergrad, was learning to navigate that. However, by the time I went into, or applied to, occupational therapy and started the program, I felt like I was in a pretty solid state. And like, I also had bunch of strategies in place and like I have my service dog Joey, who helps like mitigate my disability. So entering I was, I was good. But I would say like the first semester of the graduate program is when I started experiencing new symptoms, and that eventually led to the diagnosis of MS. Um, however, I guess due to the inflexibility of accommodations, like especially within academia and healthcare professions, specifically, I was placed on a medical leave with an option at restarting the program in fall of 2020. So this past fall, um, obviously, the MS diagnosis was difficult. But I do think the most difficult part of the OT journey like began when I entered like the rehab, or sorry, the Rehabilitation Science field, I thought I out of like, all the different programs, I was considering for my masters Occupational Therapy would be, you know, kind of the most supportive and understanding field since we worked with like disabled individuals so much. And also I was like, oh my, like my experience or knowledge, my lived experience, I'd be great. However, both before the MS diagnosis, and especially after, I quickly learned how ableism is very deeply rooted within healthcare professional programs and academia, especially health care, the medical model, views disability as it's the individual's fault. It's just their problem. They need to be fixed. Stuff like that, and very negative towards disability. Shameful, undesirable, you know, and there's so much focus on like, being healthy versus unhealthy. There's no in-between, and the idea of being "normal," quote on quote, is the whole, like, if you're anything other than the status quo, "normal" or "good," you're very much, you can be very much othered I would say. So feeling as if you don't belong. So yeah, I would say, lots of lots of different barriers that have arrived, I think the biggest one would be like figuring out how to overcome your own disability, and how to overcome that is one of the key themes, for sure. And I know, within like the literature on ableism, and health care, they note that like, one of the most significant barriers is like the attitudes and stigma of like your co workers, your managers, your colleagues. And basically, like the disabling social practices that arise from that, and like the assumptions and lack of awareness. So like, the big one that I find is like, because I was a client, they don't see me as clinician, or once they find out that I have a disability, they view me as a client. So that's a very big barrier. And of course, the lack of flexibility of the program with accommodations. Definitely, lots of different barriers that pop up.
That that's, again, a lot to digest there. Again, I find it interesting how you say how your experience changed once people found out that you had a disability, versus just being a regular, regular quote on quote, "student," and how ableism is really entrenched. You mentioned a lot of things about the inflexibility of the program, which is odd, just because knowing what OT'S do, a lot of it has to do with problem-solving and finding flexibility to get people back to functioning and being independent. So how has all of this affected you?
Yeah, so obviously, having to like take the medical leave and restart the program again, like it sent me back an entire year of schooling, and like, that's a year that I'm not going to get back, unfortunately. Um, I think like in more general terms, obviously, like the attendance policies, and like the rigid structures of the program specifically, for example, taking the full time course load, like we take seven classes, I think, when in undergrad, I would always do like a lightened course load part-time to help balance. So that's, yeah, big barrier. And I think like another, like, how it affects you is like, not all barriers are, are predictable. Like, there's unexpected barriers that pop up. So like you said, being creative and flexible, like in occupational therapy, that's something you learn fast, and you learn how to do when you are disabled. And I think also, like, one of the big ways the barriers have affected me is the emotional toll that like you have when you're a disabled person in a program that's so focused on the negative aspects. And especially with the like, like OT healthcare, we're always told to like be reflective, think be reflexive, I don't know if you guys say that. But they, they love that word, be reflexive and like thinking about everything, you know, and I think like, the key part of being reflexive is being vulnerable and open to like having the discussion. And of course, like, it's a continuous lesson for me to like, be comfortable with the uncomfortable, which a lot of people are very uncomfortable with and would rather not discuss. So I tried to like, look back and reflect on the ways to like approach scenarios differently and how if I saw myself as the client or as a student versus professors, stuff like that, seeing everyone's different viewpoints, and like especially, I think the emotional piece, like obviously, I like advocate and speak out about different issues with disabilities in general. And about my lived experience, however, sharing, like the different experiences of like discrimination, or like ableism that I've had within my university career is going to upset individuals. And that's not my intention, of course, however, I realized that like through the different like research and ways I like do share, it's like to get a conversation going and to make that space. However, it's like being vulnerable, as like as vulnerable as you can be, but it's difficult also, and it's never easy.
Yeah I think you mentioned a great point just in that there's one aspect where we have occupational therapists who may see you as someone with a disability and automatically think client. But then we also have just the systems themselves. And that occupational therapy, from what I understand is not a very flexible program and doesn't really allow for representation for students with disabilities. So I was wondering, what types of things would you want decision-makers in the health care system to know? Whether it just be like the broader health care system or people who are designing these professional health care programs?
Yeah, so I think one of the key points that like sticks out to me is navigating, like the system, disability-related supports, accommodations, all of that, it's a lot of work. And I say it's like my unpaid full-time job. So I know, like, I'm always constantly trying to send emails or providing more documentation, I've had that quite a bit, you know, how it goes. Um, so and also you like your job, well, part of the job I say is, you have to then continuously like, educate colleagues, your clients, and like, justify why you actually do belong there. And I know, like, I struggle with some of the internalized ableism. That because I am disabled, I feel like I need to work harder and like, be better, and just show everyone that I can do it, which in itself is problematic. However, I think also with that attitude, like it puts the onus for raising the different awareness and like, the reasons why we belong like those who are like most vulnerable, and like marginalized in the healthcare system. And it also increases like our burnout, and takes a physical toll on your health. So I think that's important to keep in mind, with policymaking. And I know also the idea of, like, not even just in healthcare, like in society, the idea of like, the us versus them. So like how, like I said, like, oh, I was a client, rather than like a colleague or future clinician. And obviously, this is not the case, because everyone will experience disability in their life, either if it's like attached to age, or like, who knows, right, but you will experience it. So I think that it's important to keep that in mind when developing policies and rather than seeing disabled individuals as like, oh, "the other," "I'm not like them," "other people," it's more of like an opportunity for like academia and like professions to like, improve and welcome the disabled colleagues as equals instead of inferior to others.
And that's important. I don't understand why a lot of people think that by being disabled, it automatically means inferior, or less than, and I'm glad that you're in this field are planning on pursuing this field. Because I think there needs to be a greater representation of people with disabilities in the healthcare professions, I find that I relate a lot more to my healthcare practitioners who also have their own disabilities or physical challenges or illnesses that they go through because they get it, I don't have to explain what chronic pain is, they know what it is. We don't have to talk about, you know, our additional full time job, which is documentation, advocating and re-explaining everything. So I'm glad that you're in the field. And I and I hope that by being in this field, you're educating people even though it's not your job to, but technically the program that you're in should be educating everyone to know that all types of people can be in healthcare or any profession. Um, I'm just gonna go slightly backwards a bit, because you mentioned your service dog, Joey, and I'm just curious about your service dog. Is he allowed to be with you on campus and navigating the system? And do you find him very beneficial to, like, are there supports that have been beneficial to you or?
Yeah, for sure. So Joey, or Joseph, is my service dog. I actually got him oh my gosh, how many years now? Four years ago, so he was a little puppy when I got him and I raised him as well worked with some trainers and everything. I say the training process in itself was very like therapeutic because we all know animals are amazing, but also having like that focus. And knowing that I can, not I can, having like the the bond and like support of an animal You know, it's great. But yeah, no, he definitely he comes to class with me. Um, well, when we were in person, but, yeah, all through my, undergrad, he came to classes. There was some difficulty in undergrad when there was no pet policy on campus. So there was a lot of students bringing their animals on campus. And of course, that creates a barrier for individuals with service animals, because you never know, whose dogs trained or what pets you might run into. However, I think Western we, worked on, or they worked on pet policies. So I think we'll see how that is in person eventually, one day. Yeah, but definitely, Joey. He's been great. Like I've been. I mean, I was able to graduate my undergrad, which took quite a while. And yeah, he definitely. He's a trooper, I say he needs to get his like, his dog-ree. I don't know, hahah.
Yeah, I love the pun. We always love a good pun here at Accessibili-tea. So I know you talked about just when working with Western, in terms of their no pet policy. So what is one thing or recommendation that you would want to give to Western, or specific offices, or just the institution as a whole?
Yeah, so I was like, reflecting on this, and I'm like, it's a little difficult to be like, oh, one specific thing to, I just want be like, just-just fix it just make everything accessible. But obviously, we know life doesn't happen that way. Um, I think like, in terms of recommendations, it's important to identify that like, it's the social practices that disable people, and it's like the assumptions of what disabled students like want or need. So I think the big idea is like the co-construction of like policies, research, etc, with disabled individuals is like my key recommendation. I know Western, had the external review of accessibility, I believe. And so they are starting to acknowledge that there are different issues and barriers with the accessibility department. So I'm glad that they're like incorporating disability students on like the advisory committee, so steps in the right direction. Slowly but surely.
Yeah, the review was the Academic and Support and Engagement office. And, yeah, a lot of things came up about accessibility and the barriers that came up when students try to navigate the system. So and I'm also glad that you mentioned the student accessibility advisory committee that's in the works to being out there soon. So I hope that's a new direction in terms of like the, like, you mentioned, the co-creation of policies, and really getting the voices of students with disabilities into those policies and practices and culture. Do you have any words or advice for students that you'd like to share?
Yeah, um, so I think that it's important for us not as students, but just as, as humans to like, start to challenge like the idea of normalcy. Like, obviously, everyone always says that. But like, if you actually think about it, you sit back here, like the "normal" quote, on quote, ways of being like, it's a very privileged viewpoint. And like, the fact that everyone is expected to, like, aspire to, like, be "normal" or be "fixed" within the rehab sciences. Like, it's just not okay. I know. But what I think of is, for example, post-COVID, I'm sure you've heard like, 100 times, not everyone, I want to return to normal. Go back to normal pre-COVID. Which, yeah, I understand. But like, do we really want to go back to like, the normalized systems where like, they're based on like, specific standards, norms and like abilities? And what if they like don't match yours? Maybe there's other ways of doing things? Like why why do we have to do things in a certain way? I know for myself, I can reach like, the same outcomes, the same destination, but I'm sure I have a few different paths that I've taken. And I always say, like questioning why and like, why is it this way, and who made it this way, always looking at the bigger picture and trying to remember that, no, everyone's gonna have their own path. And that's, no one's path is like better than anyone else's, and just do you.
And it makes sense that we all have our own paths. Regardless if you have a disability or not. We're all very unique individuals. Of course, we're all going to do things differently. And it's a shame that our world isn't designed in such a way where we recognize that completely. Do you have any other thoughts that you'd like to share any stories that you'd like to bring up? Before we close out?
Um, yeah, I think, I think one thing to remember is, obviously, like you just said, we all are individuals, and we all have different experiences. And of course, like, my specific experience within the OT program, or undergrad or anything is not representative of everyone. So yeah, I think that's an important thing to keep in mind. So I'm just hoping that like, by sharing some of the stuff about different experiences I had, maybe others can, like relate. Yeah, if so, I love to connect and make those connections. I know, during my medical leave, I connected with some occupational therapists who study ableism, or that's like their, what their research is focused on. And so they're out in BC in inclusive campus. I think they have a website. And we do, well, we started "a-ha moments." So coming together of different disabled practitioners, clinicians, health care workers, students, and yeah, we have different panels and bring up issues and even just having that connections really nice.
Well, thanks for sharing all of that. Sarah, where can people find out more about you? And even some of the projects that you just mentioned about other disabled practitioners?
Sorry, I was pulling up the website. And now I can't find it, of course.
Well, if it helps, we'll just add the link into the description underneath the video. But thanks for coming on. Thanks for spilling some tea on OT. And we hope that all goes well with the rest of your semester and also your journey.
Oh, thank you. Thanks for having me. I apologize if I rambled a lot. I always go on tangents. But like I say, I get back to the same, the same outcome, the same destination. And yeah, no keep up the podcast. I'm excited to see everyone else you have on here and thanks so much.
Thank you for listening to this episode of Accessibili-tea.
Stay tuned for our next episode where we chat with Rachel who just graduated from the Disability Studies Program at Kings.
Transcribed by https://otter.ai