Help Teach

Help Teach: Episode 4 - Rare, Unseen, and Misunderstood

Mihai Covaser: [00:00:00] Welcome, learners and learned alike, to Help Teach.

Mihai Covaser: Hello and welcome to our community audio project. I am your host, editor, producer, and project co-lead: Mihai Covaser. I am also a youth living with a physical disability. My most formative experiences living with a disability have come in the Canadian public education system. Many students like me, with physical, emotional, or mental challenges, go through their years of schooling lacking the supports and accommodations they need to partake of the same opportunities offered to their peers. The vision of this project is to provide educators in Canadian classrooms, students with disabilities, and members of the general public, with the tools and knowledge they need to make our institutions more accessible and inclusive for all. Join me and a diverse cast of guests as we explore perspectives on disabilities and education in this podcast series. [00:01:00] One last message for you teachers tuning in: Listen in each episode for our key takeaway that you can implement in your classroom today to help us further this vision.

Mihai Covaser: And today, I’d love to welcome one of my co-leads on this project, Alexis Holmgren, for our conversation today. Alexis, nice to have you.

Alexis Holmgren: Thank you so much for having me.

Mihai Covaser: So why don’t you start by introducing yourself to our audience here? Tell us a little bit about yourself, you know, what you’re up to, whatever you’d like to say there.

Alexis Holmgren: Thanks, Mihai. So hello, everyone. My name is Alexis, I am from Red Deer, Alberta, I’m twenty-one years old, and I am currently a volunteer and advocate for the rare disease community, and also an advocate for diversity, inclusion, and accessibility.

Mihai Covaser: And why don’t you tell us a little bit about maybe what you’ve achieved, or what projects [00:02:00] or initiatives you’d like to talk about?

Alexis Holmgren: It’s always really hard for me to figure out, I guess, what to mention about achievements, because…Yeah, the expectation right now is for me, I should–“should”, like in quotation marks–be in university. All of my friends, who are my same age, are finishing their four-year degrees, they’re all graduated this year. It’s hard, like that’s typically how society defines success, is by what degrees or by what titles you have, and I don’t really have that. I have been on, like, the Global Disability Summit panel, I’ve written programming for the National Program Platform, which replaced conventional program books at Girl Guides about, specifically, visible and invisible identities, and I really based that on my experience living with disabilities.

Mihai Covaser: Absolutely. Alexis here is one of [00:03:00] our staunchest supporters in a lot of our causes and events. Her portfolio is quite extensive and I think we’ll talk about some of that today, but it’s great to have you here to have a bit of a conversation. You mentioned the fact that you advocate for the rare disease community, so I’d love to hear a little bit about what that means, you know, what kind of obstacles you’re living with, and what it is that you’re advocating for.

Alexis Holmgren: Yeah, for sure. So I live with three rare genetic disorders, two of which are actually life-threatening in nature, and I was diagnosed with my first one at age twelve, and that was when I really started facing a lot of especially attitudinal barriers. People decided, essentially on my behalf, that I couldn’t do things. With rare conditions, it’s kind of challenging because there isn’t that awareness piece. People typically, when they hear the name of any one of my [00:04:00] conditions, their first instinct is, “I have no idea what that is.” Living with rare disease is very different for different people, but for me, I have a life-threatening heart condition with a pacemaker-defibrillator implant that I got when I was seventeen. I am allergic to the sunlight, which is unfortunately anaphylactic, and that’s a huge barrier for me to participation in a lot of things; I need to carry EpiPens for that. I also live with a joint condition that’s called Ehlers-Danlos syndrome, so that affects all of my joints and causes chronic pain, chronic fatigue, easy injuries, affects the way that I’m able to move, how far I can walk, things like that. I navigate life with a cane and knee braces, ankle braces, wrist braces, lots of braces, and a part-time wheelchair user as well.

Mihai Covaser: [00:05:00] Mhm, mhm. Well, thank you very much for that. Yeah, just to clarify for those audience members that maybe don’t know what we’re talking about here: yes, it is possible to react to UV light and to sunlight in the same way that, you know, someone with a nut allergy reacts to an open jar of peanut butter. “Anaphylactic” is a term that refers to those severe allergic reactions that you see with swelling and shortness of breath, that EpiPens are used to treat. Just a bit of clarification for our audience there. And I know that you mentioned in our previous conversations that another one of the sort of obstacles from other people that you face is that people don’t really know–they have no expectations for what it’s like to live in the way that you do, how to treat you, how to go about learning about your conditions and talking to you, so why don’t you tell us a little bit about that?

Alexis Holmgren: [00:06:00] Definitely. I think this is one of the most challenging things I face in daily life. Even on first glance, without knowing anything about me, they see I’m a young person who uses a cane and mobility aids, but otherwise, I look fine, and so it’s very confusing to be able to, I guess, reconcile that with stereotypical thoughts of what a certain disability should look like, or who it should impact, which doesn’t make much sense when my conditions are genetic. It’s almost a full second job to constantly be educating people on your conditions when you live with a rare disease, because people don’t know about them, they don’t know how to treat you, they don’t know what accommodations you might need. And for sure, living with a disability in general, that is definitely the case a lot of the time, but with a rare condition, there’s just none of that frame of reference [00:07:00] or any previous experience, and it’s like you’re teaching them multiple things at once; not just how it affects you on an individual level, but also the concept of the condition itself, and how it works, quite often.

Mihai Covaser: Yeah, yeah. I can see how that would be an issue for people. You know, we discussed in our last episode, when I had on Élise Doucet, this concept of invisible disabilities, right, and the fact that it can be quite difficult to be someone with conditions that don’t present themselves immediately visually, and then to have to bring the conversation up with people that yeah, I do have a disability, and it affects me in the following ways, and it can be… I think a lot of the time, discussions like this are met with maybe discomfort, or fear of the unknown from people, is that right?

Alexis Holmgren: There’s definitely a lot of fear in my case. I think people hear [00:08:00] “life-threatening”, or one of the second names for my heart condition is–it belongs to a family of different disorders called sudden arrhythmia death syndromes. And what a positive name, right? With death right in the name! It’s hard, like it definitely scares people, and honestly fair enough, like I think if I was on the other side and I was seeing, perhaps on a health form, maybe, for school or an extracurricular that that was the case, I can understand the initial fear. And people also worry that something will go wrong and it will be their fault. But with my condition, especially with my heart condition, it can happen anytime, like it’s a 24/7, pretty unpredictable condition, and that’s the entire point of why I have my own implanted defibrillator, because you can’t predict when that’s gonna happen. And so it definitely is never going to be [00:09:00] someone’s fault if that occurs and I happen to be with them.

Mihai Covaser: Yeah, yeah. That’s something that I’m definitely familiar with, despite, you know, having a much less severe kind of disability, and my circumstances are less severe in that sense. But I definitely–I know what you mean. I mean, going through elementary school especially, right, having CAs and other support staff helping me around all the time in elementary school, I would often be discouraged from participating in certain activities that could possibly end up being dangerous for me, because it’s hard to take on that kind of liability, right, as school staff. I mean, you know, you wouldn’t say to a kid who’s climbing on the monkey bars, “Oh, don’t do that, because you might get hurt.” I mean, people fall and scrape their knee all the time, right, that’s just part of being a kid, but when you have a disability and maybe that risk is slightly increased, it definitely becomes… [00:10:00] The bureaucracy sets in a little bit, right, with regard to that. So how have schools impacted you, then, in your experience with the sort of administration of public schools, with regard to sort of dealing with your case and providing those services. How has that been in your experience?

Alexis Holmgren: I’ve had a very wide range of experiences there, actually. When I was in the public school system, and I was officially diagnosed with my heart condition, I was twelve years old, and so I had already kind of started going through school–I’ve had the condition my whole life; I had had symptoms from about age nine-ten years old, they just were missed, because it is a rare condition that is poorly recognized, typically, even by doctors. And so having that kind of previous experience with people [00:11:00] was interesting, because it definitely changed the way people treated me, like teachers, principals, administration, as well as fellow students. It was suddenly about liability, rather than who I was as a person a lot of the time. And it was about, like, you can’t make us enforce certain policies because of the way the laws are set up in Alberta, and so I ended up having to leave actual in-person school, whether I had wanted to or not, and start up online, because my school would not get an AED, which is an automated external defibrillator used to treat people who go into cardiac arrest, and they wouldn’t do that. Even if I had brought my own AED to school, they said that they wouldn’t use it. And my school was about ten to fifteen minutes away from the hospital [00:12:00] by response time, assuming that response was really good, and that would have meant almost certain death, unfortunately, because the chances of survival of sudden cardiac arrest go down by 10% for every one minute that you go without help. And so that would be essentially zero, and that was obviously not something I or my parents were comfortable with, and it was a very long, very challenging almost battle that we fought with that. We took it to the principal, and then when he wouldn’t listen, we took it to the superintendent, and then when he wouldn’t listen, we took it up to the minister of education, and we got exactly nowhere on that. We got informed that AEDs, under Alberta’s laws, are under labor laws, meaning that they only believe the people who would need AEDs [00:13:00] to be teachers, staff, adults, administration, because young people, of course, stereotypically don’t have heart conditions, which is definitely not true, considering heart conditions in general. Congenital heart defects are one in a hundred, so not my condition specifically, but still, that’s a lot of children out there who do have heart conditions of varying degrees, and so it just made no sense, of course.

Mihai Covaser: Yeah, yeah. That’s something perhaps quite unexpected for our audience to hear, but an important statistic to mention, right, because I guess there are certain impressions that people have about disability that we talk about all the time, right; that maybe people with physical disabilities are automatically perceived to have some kind of mental disability, as well, or you know, that people with certain disabilities can’t necessarily participate in certain activities just because that’s how it is, but then, you know, [00:14:00] there are some things that we rarely think about, for example, having a heart condition and needing an AED, the fact that that’s not exclusive to adults and older people. So I think that’s quite interesting for our audience to hear. Thanks for expanding on that. And I think that’s quite a perfect place to take a little break here, but don’t go anywhere, audience members; when we come back, we’re going to be transitioning to talking a bit about that shift to online schooling and Alexis’s experience, and the attitudinal barriers that are in place for people with disabilities to really achieving their potential. So don’t go anywhere, we’ll be right back.

Mihai Covaser: Hello, and welcome back to Help Teach, where I am talking to Alexis Holmgren, the last of the co-leads on this community audio project. And we just finished [00:15:00] our discussion in the first half mentioning briefly your transition to online schooling from the public education system for your safety and comfort, and one of the things that you mentioned to me was the fact that your transition was also based on this idea of chronic pain that you were experiencing from your diagnoses, and the fact that there’s maybe stigma around that, and I think that’ll move really nicely into what we want to talk about in the second half on attitudinal barriers. So what did you want to tell me about that? How was that transition for you and what motivated that?

Alexis Holmgren: Yeah, for sure. Chronic pain is something that is so stigmatized in society in general, but then add in being a young person, and then add in being a young person with additional disabilities, and it is really, really difficult. My pain is 24/7; I am never without pain, [00:16:00] like my entire life, I have never been without knowing pain of some variety. That is unfortunately my reality, and it got much worse around age sixteen, and then I developed a form of rare nerve pain at seventeen. So I carry a lot of pain, and with that comes some limitations in my life. It means that it’s more difficult to, say, book things like exams, because I never knew, if I chose to write a test on a day, if I was actually gonna be able to write a test on that day. It was really difficult, and sometimes it would be that I’d have to send my teacher a message at like, eight o’clock in the morning and say, “I can’t even get out of bed today, I’m sorry.” It also plays into the lower expectations, like then you have people who do believe that you have pain, but then they’re like, “Okay, well, you have pain, so you can’t do any [00:17:00] of the things that you want to do.” Or on the other hand, you have the people who see that you’re doing all of these things and say, “Okay, well, you definitely can’t have pain, then.” And it’s this Catch-22 cycle where I never win anyways, and so I just try not to think about that, because it’s…Yeah, there’s no winning, and you either face doubt of the legitimacy of your pain because you’re doing things, or you’re told you can’t do things because your pain is legit.

Mihai Covaser: Yeah. So, to pick that up from the first half, you were just talking about transitioning to online school from public school, the fact that, you know, you had to do that for your safety and for your comfort, but why don’t you tell us a little bit about the story of what they told you in physical public school, prior to you making that switch, about, you know, your journey in education. I know that you’ve told me that story and it’s quite an interesting one.

Alexis Holmgren: [00:18:00] Yeah. That one, interestingly enough, was actually an online school; it was at my new online school.

Mihai Covaser: Was it?

Alexis Holmgren: Yeah. So I definitely have had a big variety of reactions from different people, and it was so unexpected, because I had been there for probably a year already, at this point, and my health had deteriorated, which–fine; that just typically means we reassess and kind of go back and see what new supports are needed, and that’s kind of what I thought the conversation I was going into would be about with the guidance counselor. I thought we would be talking about, “Okay, my goal is to become a geneticist or a genetic counselor, how do we help me get there?” But instead, the conversation was, “You really need to check your expectations for yourself, and you really should probably consider dropping out as soon as you turn sixteen, because you’re never gonna make it [00:19:00] in this anyway.”

Mihai Covaser: Wow.

Alexis Holmgren: And that, I think, was one of the most devastating things I’ve heard in my educational career, probably.

Mihai Covaser: Absolutely.

Alexis Holmgren: I felt just so…almost squished into the floor, like I just wanted to disappear. I felt very mortified that that was other people’s perception of me, that the assumption was that I couldn’t do anything. Like I had just had the bad news that my health was getting worse, and I didn’t need kind of this on top of it, when I thought that school was something that was one of the few consistent things in my life.

Mihai Covaser: Yeah, yeah. No, that’s devastating. I mean, obviously we’ve all–I think, as people with disabilities, but also our audience members listening, teachers, members of the general public; I think we’ve all heard horror stories about administration, you know, and bureaucracy getting in the way of people trying to achieve [00:20:00] what they want to achieve, within any given institution, right. One of these cases that is quite famous, quite a talking point around the disabled youth community, is IEPs, ISPs, whatever you want to call them; they’ve changed names about a hundred thousand times, but they’re really the same chimera, the same bureaucratic abomination, so why don’t you tell us a little bit about that, Alexis? What is an IEP, ISP, whatever you want to call it, and how did it affect you?

Alexis Holmgren: I think a bureaucratic abomination is such a good definition, though. But yes, so an IEP is typically an individual education plan, and that is a document that is meant to be formal, but interestingly enough, is not enforceable. It’s meant to include accommodations for people with disabilities in education, and mine specifically… I went to my doctor [00:21:00] to do kind of the pre-work, get his note about what he knew that I needed, and various accommodations; my case is complicated because you’re mixing multiple rare conditions that no one’s heard of, and so it was this interesting mix of things. And it was a decent list, but it was nothing that was out there, like they were all pretty normal stuff, like extra time or being able to write exams from home so that I wouldn’t be exposed to the sun, things like that. But then we brought that list to the school, to the administration, and that was when I discovered that it wasn’t actually my doctor who had the say of what went in the final IEP; it was actually the school, and they got to decide what of what he recommended ended up in that final document. And then even what ended up in the document wasn’t enforceable, anyway. [00:22:00] It was a very confusing and kind of painful process, honestly.

Mihai Covaser: I can just imagine that conversation: “So, let’s look at this list here. So Alexis needs access to an AED so that, you know, she doesn’t suddenly have a situation that would leave her in critical danger, and close access to a hospital, yeah, that all makes sense. Except–yeah, we’re probably just gonna take having an extra staff member check in on her once a week to make sure that things are alright over there, that’ll be fine. That’ll be enough for our purposes.” Like how does that kind of conversation take place? Yeah, I mean, similarly in my experience, it took quite a fight to actually get my parents involved in what goes into my IEP, but, as you say, especially having it enforced; I think that that’s something that is really lacking across the institution, is actually having documents that are somehow binding. Make administrators and staff members actually follow our recommendations and our needs, [00:23:00] right, in order to have us included; that’s something that is often difficult to achieve for us. You know, I’d like to bring up here a motto that you and I know both very well, and one that our audience members should hear, which is, “Nothing about us, without us.” Again, that’s, “Nothing about us, without us.” Which is a motto that we like to use a lot at the Rick Hansen Foundation and it’s quite popular amongst our community, and it basically means if you’re going to make any kind of bureaucratic decision, if you’re gonna make changes, if you’re gonna make anything to do with us, make sure that we’re there to be consulted and to tell you what it is that we really need, and to make sure that that gets there for us to access, because otherwise you’re just throwing solutions at problems that you don’t know about, that you don’t know exist, maybe.

Alexis Holmgren: Yeah, it’s really about not just being at the table, but actually having our input heard and put into place [00:24:00] with that, because when things are about people with disabilities, it certainly shouldn’t be people without disabilities making choices based on assumptions of what we actually need.

Mihai Covaser: Yeah, for sure. So then, I’ll ask you a little bit about–we mentioned this in the beginning of this second half–attitudinal barriers, which we’ve talked about throughout, but to expound a bit upon it, what does that mean to you? What is an attitudinal barrier and, you know, what did you want to say on that in your experience?

Alexis Holmgren: Yeah, there’s a lot of attitudinal barriers in education, I’ve found, and they can come from the teachers, they can clearly come from the guidance counselors, from administration, from honestly anyone, and it’s really…In my experience, there is this preconceived notion that people with disabilities are, by default, less than everyone else, will achieve less in their lives, [00:25:00] shouldn’t have high goals or aspirations. There’s also a lot of dehumanization of people with disabilities in general, and also in education; we’re seen as often a problem, or some extra item on an agenda that no one wants to show up to the meeting for. Like it’s really–Yeah, we’re not seen as other students, we’re not seen in the same way as our peers are, and it’s not seen as, “How can I help you get to where you would like to go in life with your goals?”; it’s always, “Okay, what is the absolute lowest bar, but we can still get you passing through our school?”, typically. Like I try to do things, because my biggest motto in life, whether in education or just existing, is that I want to live my life, I don’t just want to be surviving. Because at the end of the day, it is still an accomplishment for me [00:26:00] that I’m alive right now, because living with life-threatening conditions, that is never a guarantee and it’s something that I don’t take for granted. But it’s also, I don’t want to spend my life in a way that isn’t meaningful to me, like I wanna do things that matter, I wanna do things that make a difference, and I want to enjoy, like, my life in whatever way I can for however long that may be.

Mihai Covaser: Wonderfully put. That’s really moving; I’m sure our audience will agree. I think that’s a great place to transition to sort of the end of our episode here, and our key takeaway. So assuming that you’re an educator out there and you see those signs, we have some suggestions for you for what you can do, and you know, I think you’ll hear us mention something similar in a few episodes in the future, but that’s because, first of all, you know, running a podcast, being advocates–vocal advocates–we really appreciate the value [00:27:00] of sharing lived experience and having conversations, but also because it really is an effective tool. So, Alexis, why don’t you do the honors and tell us a little bit about what educators can do to help out in this particular situation?

Alexis Holmgren: Definitely. It really comes back to having a conversation with your students who do have disabilities about their goals, not just about their immediate needs, their accommodations, or their problems; it’s about what they actually want to do in life, and how you as an educator, or a principal, or an administrator, whatever your role is in the school, can help them get there. And that might look like asking them, “What are your expectations from me as an educator?”; maybe, “What would you like to achieve in my class?”; and maybe even, “How can I help you to achieve that?” And that really helps us, as students, know that you’re there for us, you’re wanting us to succeed, [00:28:00] and also, it can help educators change their mindset from seeing us as a medical case that just is a chore to be dealt with, to an actual human being and a student with aspirations and potential in life.

Mihai Covaser: Absolutely. Very well put. Well, thank you so much for joining here today on this episode, Alexis. It was wonderful to talk to you; you had some great insights and I really appreciate you coming on.

Alexis Holmgren: Thank you so much for having me.

Mihai Covaser: You’ve just heard another episode of the community audio project, Help Teach. I’d like to give a huge thank you to my other co-leads on this project, Payton Given, Maggie Manning, Elise Doucet, and Alexis Holmgren, all youth leaders at the Rick Hansen Foundation, who I’d also like to thank for their continued support in this initiative and others. Big thank you to Every Canadian Counts and their #RisingYouth initiative for funding this project. [00:29:00] I’d like to give a huge shout-out to our community mentor for this project, Charl Coetzee, and to our professional contact helping in the editing process, Chester Hull. My name is Mihai Covaser. I am your host, editor, and producer for this podcast series, and you can look forward to finding this podcast on Spotify and Apple Podcasts soon. Also, in the show description, on either site, you will be able to find a link directly to my website, where we will be posting transcripts for each episode for whoever would like to access those, and any further links to other resources will also be put in the show description. So everything that I talked about in this episode, you can find handy in the notes once we post it. Tune in next time for more great conversations and key takeaways that you educators can implement in the classroom today, to make it a more accessible and inclusive place for all. Thank you for listening, and I’ll see you next time.