A Student Perspective: Accessibility in Education

Next, speakers that we're gonna have, a really really wonderful story, by some, again, really really talented people, that we're very fortunate to have here today. Martin, we've already met as part of our AI panel that he moderated a little bit earlier on, but we're gonna hear a really great story from, from Johanna. I had the pleasure of meeting Johanna, just after she'd seen Taylor Swift on concert in concert. Don't wanna put too much pressure on you, Martin, but that's quite the act to follow. So maybe without further ado, I will hand over to Johanna and Martin. Thank you.

Do I need the clicker? Well, hello everybody. I hope you've enjoyed your day as much as I have and, you are in for a treat because my fellow Swifty here with me today, has quite a story to tell, but also quite a challenge for all of you in the audience around, what you do in the way that you design your courses and programs, but more importantly, how you make sure you allow every one of your students to bring their genuine self to their courses and programs. So welcome to Canvas Con. Thank you. Yeah.

So why don't you, go ahead and tell our audience a little bit about yourself, but particularly the journey that you've been on. Why don't you bring it to life for them? And then I've got a bunch of other questions I'll follow-up with. So over to you. Thank you. Yeah.

My name is Johanna Pertnapjarmastotir and I'm from Iceland. And my journey in academia and the education system has been quite, unique to say the least. So, yeah. I was a student who hated school. I, dreaded going often and I have severe dyslexia, ADHD and autism.

And in the tenth grade, I read at the same pace as the average third grader despite being in countless tutoring programs and had multiple, educators who were helping me. And also in the tenth grade, I was sent out to run laps around the school because I just couldn't sit still. And so I had kind of just decided that education wasn't for me. That was the message I was told by teachers. Some didn't even want to help me.

They thought, like, what is the point? It's not like it's gonna that you're gonna be anything or go into academia. It's not for people like you. So I decided to just focus on soccer and, you know, physical sports which I was good at. So, but then that didn't work out because I got quite sick. And for context, I was sexually assaulted when I was nine years old and started developing, or I had PTSD following that and developed chronic pain and became very ill.

I and then when I was sixteen years old, I had lost all of my friends, was in the hospital, in a wheelchair and couldn't walk and had no prospects of leading a normal life ever again. And I was told by my doctors that they thought that I would probably never walk again. So the fact that I'm here today is nothing short of a miracle, and I want to share my journey into how someone like this can also be someone like this. We need to start believing in students with disabilities and creating educational environments that support their needs instead of creating environments that hinder them. Now, I'm a student at the University of Florida and I'm studying education science and health promotion and I'm a disability advocate.

I'm on the Dean's List with a three point nine eight GPA and I'm leading an international research project and then involved in two other research projects. I've studied in Lisbon, London, Guatemala, and Paris. And kind of after I after I got healthy, I had lost so much. I had, you know, the formative years where you do everything and, you know, people remember I was just in the hospital. So when I got out, I just said yes to everything and was just like, sign me up.

I want to go to Guatemala. I want to go to London. I want to go to Paris. And, yeah, so that's kind of my story in a nutshell or like the broad overview at least. And so, yeah.

-Yeah. -Yeah. So just before we do one thing because we're all educators, can we give Johanna a round of applause for what she's Thank you. Now, you really are a remarkable human being, but I know you share your story now because it's a story that needs to be told, because we leave so many behind in our society, often because we don't see the challenges that they confront in their everyday lives, don't we? It's sort of because it's invisible to us, we just don't seem to care as much about it. Does that resonate with you when I say that? Oh, yeah.

That resonates. It's accessibility. When you're not in the minority group, it can be hard to imagine the struggles that people face. And as someone who has experienced, cognitive, mental learning, and physical disabilities, I have quite a broad experience of different barriers that, you know, we encounter in society and especially within the education system because, you know, especially with learning disabilities. Learning disability, what worth am I in the education system with that label? And that's kind of something that we really need to think about as educators.

So, yeah. So let's dig a little bit deeper on what in I mean, you obviously battled your way through incredible adversity. You came out the other side. You devoured the world. But what made you, what inspired you then to really want to become an advocate? Not not just somebody who had experienced it and conquered it, but you've gone one step further.

You've you've wanted to advocate for it. What what happens? So I was invited to speak at a conference in Iceland at the beginning of last year. This was the the psychiatric center or the National Hospital Psychiatric Center conference in Iceland. And the one of the people involved in that had been my doctor when I was in the hospital. So I was at Florida and just got this random email of being invited to kind of tell my story.

And initially I was terrified to speak because I had been told by so many, by counselors and stuff to never share with my, teachers the diagnosis I have because they could use that and, you know, their bias towards that affect my grade. And I've experienced that. So I kept really quiet. I didn't tell anybody and just, you know, try to fit in and try to be normal. So when they asked me to speak, it just the first thing, I was just very scared of wanting to wanting to share my story, but not wanting to, you know, have that negatively impact me.

So it was one of the hardest things that I've done and but I'm so glad I did it because after I kind of spoke about the educational environment that I had found at UF, University of Florida, which has allowed me to excel and, you know, my interest in health education, so many people reached out to me. So these were just random people I'd never met telling me that themselves, their children or partner or siblings also face the same struggled struggles I was facing. And they were asking how can how can we access this kind of environment? And I was just like, I'm not gonna tell everybody in Iceland to go to Florida to, you know, get an accessible education environment. So I thought, why don't I just add a specialization to my degree and I could become an instructional designer? And then I took it one step further and was like, why don't I just create a company in Iceland that could serve institutions in Iceland and the EU, to make their educational environments more accessible? So I wanted to take it a step further because of my broad experiences and because I just felt like a responsibility to do so and I would want to do that for, like, little Yohannas around the world. And, those five year olds.

Yeah. Those five year olds. Yeah. So, just folks, just imagine for a moment, we're all in the business of education. Imagine what it must be like to be one of our students where the learning advice they get is don't be yourself, don't be vulnerable, don't speak up for the help that you might need because all of those things might trigger adverse, even more adversity and struggle for you in your ability to succeed.

And yet that is the lived experience of so many of our students who, by the way, when they go forward in their education journey, they carry that trauma from earlier on and it compounds as they move, as they move through. And so I think not all of us, but some of us I think owe you an apology. And for those that, you know, have the learning challenges that you've got because you'd think we would be the one sector in our society that would know better, but your advocacy is helping us get better. So why a why a company? Why did you tell us a bit more about the company and the areas of focus? Just sort of headline it. I know we'll come back to it, but just tell us a bit more about HEART.

Yeah. So I and to give a little bit of a background story, at the conference that I first spoke at, I was sharing what I was doing in health education. So after I was sexually assaulted when I was nine years old, we have this program in ISEN for sexual assault survivors that are children. So they get free access to therapy and learn coping strategies to cope overcome adverse adversities in life. And these skills have saved me.

I would not be where I am today without these skills, but I believe every child should have access to these skills because they are quite simple and they don't need to be, you know, implemented in the context of something horrible because every person goes through something, every individual. There is no avoiding that. So how why don't we equip students with the skills to overcome adversities, lead healthy lives, and make informed decisions so they can proactively deal with issues instead of engaging in maladaptive coping strategies. So that was kind of what ignited me and what that was my why through the very hard and lengthy process of me going from this to UF and to where I am today. So but then I realized there is so much lack of access to education period, not just health education.

So that's why I wanted to focus on that. So HEART stands for Health Access Research Technology in Schools and it works in Icelandic and English and took me a very long time to find her makeup. And so, yeah, our mission is to help institutions and educators create more accessible learning environments, especially for students with disabilities, because I want to go beyond accommodations and look at inclusive education spaces that are designed for all students, which our education system today, I'm sad to say, is not. Yeah. Which sort of leads me to my next question, which is how would you rate the state of accessibility in education in Iceland and globally based on your work and the work of heart? Yeah.

So in Iceland at least, I am still today, I cannot pursue a degree at any university in Iceland because I don't have what is called a studentsproff, which is a high school diploma in Iceland. Mhmm. So despite everything that I've done or accomplished, I still don't have access to education in Iceland. So that, I think, really paints the picture of accessibility. And I think this would be true for many places also in Europe that have quite, traditional education spaces, at least compared to my university in the US.

So we have a long way to go, but I think, you know, the disability community had been advocating for so long for more virtual and online environments and always been told no. And then COVID happened and overnight everything was possible and everything became online. So, yeah, the changes that happened because of COVID, in regards to that is why I was able to, get into UF. So Yeah. So it's sort of, we're so stuck in our system of these are the gates to participate.

These are, you know, that almost designed on who we exclude rather than who we include to quote Arizona State University's charter, where they've turned that around. So what do you think are the biggest barriers left and what do you think the impact that's having on students? Like if we were to go away and go back to our institutions and our systems and say, right, what are the top things we should be checking off? What what would what would they be from your perspective? First off, people don't even know it's a problem because the people who don't have access don't get near the point of where we're at. They they don't go into academia, period. They go into other areas, into more creative fields and other like, if you Google, oh, you know, famous people with autism or dyslexia or ADHD, they're most often not in academia unless we're talking about, like, Einstein or stuff like that, but, like, you know, pioneers in their field that thought outside of the box. But then, like, today, we don't value those people because they don't fit in the box that we want them to fit in.

So just knowing that there are accessibility issues is the biggest barrier. So we need people like me in these spaces to be able to recognize the barriers because you don't really see them unless you put them there and are able to have them interact with the environment. So representation is a is a huge, huge issue. But then there are so many also barriers to barriers to getting access to accommodations and then barriers within the accommodations that are available and that we deem appropriate. And there are so many other things that I won't go too much into detail about, but I think representation and just awareness is the biggest one right now.

Yeah. It's why, I mean, there was some method in our madness. We wanted the story to be told by a student with lived experience and I'm sure that is resonating with the audience much louder here than if we had simply got up theoretically and talked about these are the barriers and this is what you should be doing about them. So having the student voice, having the champions, having the stories, having the inspiration and perhaps more importantly, helping our academics understand why, because I don't think it's self evident if you haven't suddenly found yourself shut out of being able to learn, which and I believe education and health care are human rights. Yeah.

So, you know, when we deny somebody the ability to carry on in their education, it's just as if we denied somebody the ability to heal, to be, to be healthy, to, to exist. So I think you're right. That whole awareness is just so important. So let's go to the positive. There's gotta be some institutions doing it well.

Yeah. So you've called out yours. Mhmm. And and I'm I don't think there's anybody here from your university here today. But maybe when they watch this video back, we can all thank them for allowing you to have now this journey that you've been on.

Who else would you call out and why? I haven't really because I you know, the experience that I have with UF is that of a student. I've been there for, more than three years now or I'm in my senior year. So I think what they're doing is great because they're doing online really well. And the way they use Canvas is they use it in such an amazing way because I've seen other institutions and seen how their Canvas looks like and I'm just like, what? Is this the same, like LMS? And, yeah. So in the way in which they, you know, present their instructional material and educate students and how they design their courses allows me to use my strengths and excel in the course.

So instead of being just hindered by the environment, it is what it allows me to excel. Mhmm. No. Thank you. And I think there's a really good point there around and we've seen some of the technology showcased today around, you know, as we think about instructional design inside Canvas is out of the box, it should be just one of the fundamental things we think about in the instructional design is how accessible is this to the students that we that we want to serve, not as an afterthought or a nice to have, but just a fundamental building block before any course is released.

Yeah? Absolutely. And we need to look at, you know, cognitive load and that we're not, you know, inducing cognitive overload for students all the time in courses. I think that's very important when talking about, students with ADHD and autism and dyslexia to very to have that in mind and structuring courses, you know, in regards to that. So I think that is extremely important and communicating with students as well and to, you know, connect to the point of representation really matters is that, we need also students like me in research. Yeah.

And we need these voices in these spaces because and having, you know, the lived experiences of people who are in it being told and not always having it filtered through the implicit bias of neurotypical researcher. Like, that's the really key part we need to focus on. And so we need to have but we need to have first access in this space so that they can get educated and contribute to the field. Thank you. Are there any standout tools or technologies you've come across that you think are really breakthrough in supporting students of all backgrounds and learning challenges? Yeah.

I use AI a lot. I use a lot of tools. I wouldn't be able to, you know, do my degree without them. So I use Speechify and Grammarly and Motion and, ChatGPT and basically all of it. And it it allows me to pursue an education.

And I think it's such an important part is, you know, how do you look at it? And a good example that I like to bring up is that if you are teaching a grammar course and, you know, I certainly you wouldn't have a grammar software within that, but in all other subject areas that you're testing children's or students' competence in a given field or subject area, you should be able to have, you know, a grammar tool to help you so that you can accurately reflect your confidence in that so that the teacher can, you know, assess where you're at instead of having the grammar issues or something reflect negatively on your true competence in that given subject area. So and these tools, we can use them today. So why aren't we teaching students how to use them so that they can perform to the best of their abilities in their chosen field after they graduate. Oh, we should just bottle what you just just said because in many ways, there lies the great challenge with not only much of how we teach, but a lot of how we assess as well. You talked a bit about artificial intelligence there.

As you look ahead, what, what promise do you think that it, it has in the accessibility area? Like when you sit there and dream about the application of AI for accessibility, what comes to mind? Oh, I think, like, the potential is endless and I think it plays a huge role in, you know, minimizing the gap between students who have access to educations and those who don't. Because it Yeah. The equity that it could bring into education spaces and the personalization is just you know, it makes me so excited because I feel like I'm also living through it. I've been in kind of I'm twenty three years old right now, and I, I've kind of been able to use it through my university degree. Like, when I started, there were tools that weren't available that are now available that I use every day and can't really imagine not using.

So it's it's really fun to look towards that future and having that incorporated more into education spaces. Thank you. And from your experience and the work that you've done in your research and your learning, if if I'm a student in one of our institutions and I want to get access to those tools, do we make it easy? No. So talk about that because here I am already a little traumatized. I'm already a little worried about admitting that I could use some help.

We've got licenses to the tools and we've got the tools and we believe in them, But now I hear you saying it's not easy to get them. Well, why? How do we make it hard? Or so, you know, if you look at the education space and you don't just look at, you know, you're an individual and this is your problem, you should just deal with it and you need to put money aside to, you know, pay for the subscription of all these tools, which I do, then, you know, because in order to be able to get them then free, you would need to be with the disability resource center. And, you know, that doesn't even exist in Iceland. And, but it does at UF, but that process is a lengthy one and you need to have documentation and you need to have access to a doctor. And the waiting list for getting diagnosis, I don't know if anybody knows this, it's a very long time, especially in Iceland.

And so all of the there are so many barriers just to the point of being able to be at a disability resource center if your country or school has one. So for then that center to have access to these tools in an equitable manner, that's that's then another story. So we have a long way to go in that in that sense. But, yeah. Yeah.

You're starting to get the picture here, ladies and gentlemen. It's starting to become a little clear why we wanted Johanna to tell a story for you today. So here we are. We're in Barcelona. We've got this amazing group of people.

You're now an incredible woman who has battled through the adversity and is an advocate for accessibility. They want your advice. So what's your advice when they leave here, they go back to their institutions. What advice have you got for them about what they should think about doing differently? Just talk about it. Talk about it.

Make it matter. Make it be something worth speaking. Don't just listen to me here, like, today and just be like, oh, that was interesting and then leave and forget. Actually, like, take take a minute and and speak to colleagues that were didn't have the opportunity to come here and tell them about this and kind of start also viewing what you're doing and the way in which your institution works differently and looking, okay, is it accessible? What are what are we actually doing? What are do students have access to? How are we assessing knowledge? Are we, you know, providing multiple means of assessment and, you know, variety of ways to complete assignments and do, you know, for students to get educated. So I would just love for people to think about it more, talk about it.

And, currently now, I'm, you know, in my university degree, but we do offer consultations at my company about accessibility. And so we I also do public speakings to try and spread this message more because it is it's an important one. And, I think that would be the biggest, the main topic for where we are at right now. Yeah. Why don't you bring your next slide up so that people can see the QR code? That one, sorry.

Yeah. We'll come back to the other one. My apologies. I snuck that one in. If some of you want to access the resources, there's a QR code that that you can, can get access to the organisation and you and see the work that you're doing and use the use the resources.

I'm wondering also though, as you're giving advice about starting the conversations, you've also talked about getting the students with lived experience into the conversations. You've talked about igniting the why, why this matters. You've looked at how they might overcome the inherent barriers or challenges to getting access to the tools and technologies. But I'm really struck by a conversation I had with a Canadian academic recently who told me the story, of his work and his PhD was how did you help people with disability mainstream and function effectively in our societies. And he was inspired in his work because his younger brother had a very significant physical disability and he watched as his younger brother grew up all the, all the ways that that person, his brother encountered barriers in their life and society.

And so I turned to him and I said, so in all your research, what was the what's the one characteristic that opens people's minds up to why they need to do change and do things differently? And he said something that it shouldn't have surprised me, but it did and then it delighted me. And he said the single biggest thing is that if you actually get to know somebody, and we were talking about acquired brain injury, if you get to know somebody with an acquired brain injury and you befriend them and you work with them, that is the single biggest determinant as to whether you will change your attitudes, behaviors, and values to welcoming them into our society. So when you talk about conversation, I think you're also saying let's just normalize it. Let's just realize that we've got a very large percentage of our learner population and staff population that have these challenges. And instead of having them to go through a gauntlet to prove that they need help and assistance and encouragement and support, why don't we just assume that and make it as easy as we can? So last question for you.

What keeps you motivated to continue to work, do this work in your field despite all the challenges? Why does Johanna keep doing this? Yeah. So two things I wanna sneak in that inspired me while you were speaking. So because, yeah, it's the working with people, just like Anne Marie was talking about earlier this morning. Working with students and with people with disabilities is so important and not just for them or, you know, to them or because they they have so much to offer. So we need to really actively seek, their collaboration.

And, actually a great example of this is I'm doing a research project at, my university with my old professor. So I took a course last semester and I had so many questions. And I met with her biweekly throughout the entire semester, and we worked things out. And then afterwards, she invited me as an undergraduate student to collaborate with her as a professor to redesign the course. And then we're doing a case study about the fact that a professor is working with an undergraduate to redesign a course.

And I think that could provide very useful insight for a lot of people here. So, and then I forgot my other point, but That's right. So what keeps you going now? What fuels you to keep doing what you're doing? Yeah. So I want to be the role model that I never had and show that students with learning disabilities do belong and can excel in higher academia. We just have to create the environment that support their needs to so that they can tap into that potential because it's there and it can, you know, do so much for society.

And, yeah. And I just kind of thought that it made me really angry if I would have just gone through everything I went through and and it have meant nothing that I would just be one casualty of hundreds of thousands of people. And so I kind of like if if I don't stand up for others, I'm just like someone else who didn't stand up for me. So And I hope you realize how remarkable that makes you Because a very large percentage of this audience, myself included, we've battled through a lot of adversity in our lives and popped out the other side, learned from the experience, been enriched by it, used it to build grit and resilience and got on with our lives. But only a very, very small percentage of people then realize that they want to be the role model for their future self and get out there with courage and determination, spread the word, inspire, challenge, and leave the world a better place.

So can I just say thank you for your story? Thank you for sharing it with us. Thank you for leaving us all in a pretty reflective space before we consume copious amounts of alcohol that will help us, go into a deeper reflective space. But ladies and gentlemen, can I please just ask you to give Johanna a huge round of applause? Well done.