Episode 190: Dyscalculia education and advocacy – with Elena Chambers

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

On today’s episode, I’m speaking with Elena Chambers, a disability advocate, writer, poet, and photographer. On her blog, Dyscalculia Community, she writes about disability in a social context, societal level ableism, and her personal experience of growing up with a learning disability.

She also posts on social media about issues pertaining to disability justice, inclusion, and awareness. She currently works as a special education paraprofessional in the Ann Arbor Public Schools and will begin a Master’s in social work at the University of Michigan in September 2023. Elena, welcome to the podcast.

Elena Chambers: Thank you so much. I’m excited to be here.

Carolyn Kiel: Yeah, really happy to have you here today. So you have a blog on dyscalculia and much personal experience with it. So just to start off, for people who may not be familiar with the term, what is dyscalculia?

Elena Chambers: Yeah, so Dyscalculia is categorized primarily as a math disability. So it’s a learning disability that affects you know, someone’s ability to understand mathematical processes, complete math problems, understand any kind of numerical sort of operation. But the reality is, it’s a lot more complicated than just what that definition would suggest in, you know, in real life.

So it turns out there are a lot of different things that we do in life that we wouldn’t necessarily associate with numerical thinking, that actually require really similar thought processes that people with dyscalculia might struggle with. So, you know, we might have a harder time reading a clock. Spatial awareness, spatial relations, anything that requires an understanding of dimensions can be hard. Depth perception, things like that. So as you can imagine, there are a lot of things that don’t necessarily have to do with math that can also, you know, fall into something that would be hard with dyscalculia.

Carolyn Kiel: Yeah. So it really is much more expansive than just, you know, I think sometimes people think it’s just like not being good at math, but it is much, much broader than that.

Elena Chambers: Yeah.

Carolyn Kiel: So in your personal experience with that, how did you get diagnosed with dyscalculia?

Elena Chambers: So I was not diagnosed until I was 18, so I lived a lot of my life not knowing what was going on, but there would be a lot of things that I just noticed that did not come easily to me, that came easily to a lot of my peers, or certain developmental abilities or stages that I was not hitting at the same time as some of my peers. So I couldn’t, I really struggled to learn how to ride a bicycle. I couldn’t, I had like no sense of direction. I couldn’t find my way around even like my own city. I really struggled with reading a clock. And you know, by the time I got into my teenage years, I struggled a lot with driving. So there were just all of these things that I seemed to have a really hard time with, and I was struggling a lot in my math classes. You know, in school things were just taking forever.

And, you know, I failed algebra in eighth grade and had to retake it in ninth grade. And then even the second time around it was like I had to devote my life to it, to even, you know, to get through. So I think at a certain point, both my parents and I started to realize there was something, there was something happening that wasn’t just me having trouble with stuff or me refusing to try or, you know, all of those kinds of things that are sometimes misconceptions about people who have undiagnosed learning disabilities.

And it was actually my mom who finally Googled “math learning disability” and she found dyscalculia. So after she passed this information along to me when I was 18, I decided to get tested and sure enough, I did have dyscalculia and that just opened, it just made things make a lot more sense to me at the time, and it still does. I mean, I was really grateful to know, kind of have an explanation of why I had had trouble with things growing up.

Carolyn Kiel: Wow. So that is really going through your entire, like primary and secondary school without knowing and, and trying to really make sense of it. So yeah, I can see how that would be maybe kind of a relief or at least a justification for, okay, now I know what, what’s going on.

Yeah. So since you weren’t diagnosed until you were 18, like how did having that diagnosis much later in life affect you? Like in childhood or even in adulthood?

Elena Chambers: I mean, in childhood, I think I was always just so confused, like, what is it about me where I can’t do these things that my peers don’t even seem to find difficult? Or it would occur to me that like somehow everyone had learned to do something and I just hadn’t learned to do it and I didn’t understand why. That was really hard cuz I felt very, like there was something wrong with me and very like separate from a lot of my peers or maybe I wasn’t smart enough and stuff like that. So I think it definitely was hard growing up, like not understanding what was going on in my brain and other people also not understanding what was going on either.

Carolyn Kiel: Mm-hmm. Yeah, because I feel like dyslexia has, like people kind of understand or have heard of it, at least, they may not exactly understand what dyslexia is. But things like dyscalculia, even dysgraphia, I feel like are much more common than people realize and there’s just not a lot of awareness about those conditions.

Elena Chambers: Yeah, definitely. And it’s funny because when I, you know, had this sense of like, there’s something going on, but I don’t know what it is, dyslexia was the only learning disability I’d ever heard of. So I was like, maybe I have that. Even though I didn’t have like any symptom of dyslexia, I just really wanted an explanation.

So I started like, talking to people who had dyslexia. And then I realized, I, I don’t have this, I don’t know what’s going on, but I don’t have this. But for a while that was something I, you know, that was the first place my mind went to. Cuz that was the only learning disability I’d heard of.

Carolyn Kiel: Yeah, yeah, I can see that. So how does dyscalculia affect your daily life now as an adult?

Elena Chambers: So the biggest way that dyscalculia affects my daily life currently is that I am struggling so much to learn to drive. I have been trying since I was 18 and now I’m 24 and I am still having a really hard time learning how to drive. And part of that is because of the challenges that come with having dyscalculia and driving. And part of that is also the barriers to having driving lessons and renewing your permit and all of that once you’re an adult, cuz it gets a lot harder and a lot of driving schools don’t want to teach adults. A lot of instructors don’t know how to teach adults. There’s a lot more barriers to learning to drive once you are, you know, over 18. So that’s been really hard.

So I have to get a little bit creative with transportation, especially because public transportation is not as perfect as we might want it to be. You know, the buses don’t always come, in predictable, you know, unpredictable times and stuff like that. And so I think transportation is one of the huge ways that dyscalculia affects my everyday life currently.

Carolyn Kiel: Yeah, and I would imagine with the driving, like you had mentioned a lot of the spatial challenges that you had had is a big part and just sort of knowing like where your car begins and ends is like, takes long time to imagine even harder with the, the spatial challenges to, to really get a feel for that.

Elena Chambers: Very much yes.

Carolyn Kiel: Yeah. Wow. So right now you’re working in the field of special education. So what led you to find that or join that as your career?

Elena Chambers: Yeah, so I took kind of an interesting path to get there because I was a music major in college. But the beginning of my senior year, end of junior year, I started to realize that was not what I wanted to do professionally. And so I, I really had found a lot of fulfillment in, you know, my blogging and writing and helping people with disabilities. And I thought that special education potentially could be a field that I might wanna go into because that would allow me to do more of that for my job. And so I didn’t have an education degree or special education degree or anything like that, so there was a little bit of limitation in terms of what I could apply for.

But there were all of these job openings for paraprofessionals in the Ann Arbor schools and there weren’t a lot of requirements about like what kind of degree you had to have. It was more like, do you have experience, are you willing to learn? Like, stuff like that. And I did have some experience working with kids and I had some tutoring experience and I had done some research on like disabilities, and disabilities and children, and stuff like that. So I kind of had those things going for me. So I applied to a couple of positions in paraprofessional in Ann Arbor schools. And I was really lucky to be hired at a really amazing school. So that’s where I’m at now.

Carolyn Kiel: That’s cool. And what do you do as a paraprofessional in special education?

Elena Chambers: So I am working at a school that goes from preschool to second grade. So the kids who I work with are really young. But basically the way that it works in my building is that paraprofessionals are assigned to one or two students who need extra support. And so throughout the day we will support that student in doing their work, behavioral challenges you know, helping them navigate social interactions, you know, communicating with their classroom teacher about what they might need some extra help in. Stuff like that. Just making sure that they can get through the day and that they are okay. And if they need any help with anything, then we step in. If there’s a conflict that they’re involved in, we step in there. So that’s kind of our job as paraprofessionals.

Carolyn Kiel: And do you feel like your own experience having learning disabilities and, and going through the school system kind of either helps you or influences the way that you work with your students?

Elena Chambers: Yeah, I think that having a learning disability myself gives me more empathy for students who are struggling in school in ways that I might have experienced too. And it helps me to just have a lot of patience, um, when someone’s just not getting something or having a hard time with something, because I know that that’s what I needed when I was growing up too. And so I think that’s one of the big ways that it helps me in my job.

And then I think, you know, in other ways, because it’s such a, like, personal thing for me. Sometimes it feels really discouraging when I want to be able to help but feel limited by, you know, structural barriers or something like that. And I think that can be really hard. So there’s, there’s two sides to it I think, but overall it’s been really rewarding.

Carolyn Kiel: Well that’s great.

For dyscalculia specifically, are there specific accommodations that can be done either in school or in the workplace, or the things that you’re familiar with or that have worked for you personally?

Elena Chambers: Yeah. So in school there are accommodations you can have. The ones that I had, the ones that I was supposed to have, were extended time and a quiet testing room. But a lot of professors were very reluctant to provide those accommodations. At least at my school, at Michigan, there was a lot of pushback — and this was not everybody, but this was a fair amount of people — to giving those accommodations. And I was also in college not the kind of person who really wanted to like, argue with people, so I also didn’t push back that much. But you know, there were a lot of professors who just didn’t get that this was something they had to provide, like not, you know, that it’s optional.

So that was really hard. And so a lot of professors just did not provide the accommodations at all. And that was challenging. But there were definitely some who were really great about it too, so that was good.

Carolyn Kiel: Is there an office of disability for students at the college that you had to work with to get the accommodations? Or like how did, how does that work where you went to school?

Elena Chambers: Yeah, so where I went to school and where I’m going to school next year, there is an office of disability services and they recently just got new people. So I’ve heard very positive things about the changes that have happened too, which is awesome.

You submit all of your paperwork that says you’ve been diagnosed with a disability. And then they will look it over and tell you what kind of accommodations they think you would be eligible for. And you meet with them and you talk about it. And you know, then once you come to an agreement about what kind of accommodations you might need, then they’ll give you forms to hand to your professors saying that you have these accommodations.

So, I was told it was required when I first came, that the professors were required to provide these accommodations. But I found out later when I looked more closely at the paper, there was a little note at the bottom that said something to the extent of like, “if you are unable to provide these accommodations for any reason, that’s fine.” So it was not, it was not quite as mandatory as they made it sound. So that was also kind of a problem.

Carolyn Kiel: Oh yeah. Wow. Yeah. That’s a big loophole in the, the fine print at the bottom. Yeah. Wow. So, yeah. So, and now you’re going to be going to school for a master’s in social work. So do you think you would wanna continue, like, working with, with kids or do you think you’ll work with adults or you’re still deciding?

Elena Chambers: You know, originally I thought I am only gonna work with kids. Like that’s what I wanna do. That’s my goal. And I am getting a certificate in school social work, so that might be the path I take. But lately, like in the last couple of weeks I’ve started thinking maybe I do wanna work with adults too. So, hard to say. I could definitely imagine myself doing either or both at different points in my life. But right now I think the plan is to work with kids primarily.

Carolyn Kiel: Right. Very cool. Wow. So as part of your disability advocacy and activism, you have a blog where you write about your experience with dyscalculia and general education about dyscalculia as well. So what inspired you to start blogging about your experiences?

Elena Chambers: Yeah, so it’s interesting cause the first article that I ever published, I had written long before I ever published it. I was just feeling really frustrated with, you know, the lack of understanding and just not feeling like people understood my experience or that, you know, there was anybody else who shared this experience. So I wrote this blog post kind of, but I didn’t have any plans for what was gonna happen to it. It was just there on my computer.

And then when the pandemic happened, I was just like, I had a whole kind of like life crisis about like, oh my gosh, what am I gonna do? And I sort of took this time to reevaluate my life cuz I was also in a really, really not, not so great place mentally. So I, you know, kind of took this time to reevaluate my life. And I realized like, that I was so afraid of telling people that I had a disability in my school, but that, you know, now that everything was kind of different, and I wasn’t seeing any people, it felt like it just didn’t matter anymore.

And so I published this post that I had written, with originally no intention of publishing, on a platform called medium.com was where I started. And then I moved over to my own kind of personal blog. And it was great! And I, I’ve always loved writing. So that turned out to be a really great way to kind of share my experiences and knowledge with the world.

Carolyn Kiel: Mm-hmm. That’s really cool. And you’ve had some articles and other creative work that you’ve done published in other online publications. So were all of those also on the theme of dyscalculia or were you writing on other topics too?

Elena Chambers: Yeah, so I took a little gap year in the middle of my education when classes were online and everything. And I went back for my senior year in 2021. And so I joined this publication called Mentality Magazine that was part of the university. And they published a lot of things relating to mental health and mental health awareness. And so the first article that I ever wrote for them actually was about the experiences of students with learning disabilities on campus. And so that was really great. That was really a great opportunity.

But being part of this magazine also gave me an opportunity to branch out because they asked people to do a lot of different things to run the magazine. So I, you know, started learning how to do some like photography and graphic design work, which you know, I wouldn’t say I’m any kind of expert in, but I did have this tiny little experience with. And, you know, I wrote some poems for them and did some like visual art kind of stuff that I had never really, you know, seriously explored before. So it was a really fun opportunity in that way too.

Carolyn Kiel: That’s really cool. Yeah. It’s always fun to get opportunities to write in different mediums and just, you know, expose your work to different audiences. That’s really cool.

Have you gotten a lot of great feedback or people, maybe other students or readers with learning disabilities reaching out to you based on what they’ve read of your writing?

Elena Chambers: Yeah, I mean, not so much among like just the student body at Michigan because it’s very, like, it does not seem like there are a lot of people who have learning disabilities, and if there are, I think everybody’s kind of keeping it secret because it’s a little bit stigmatized, I think, especially in a school that prides itself on being so competitive. The students are so, you know, focused on academic success. I think it’s really hard in that kind of competitive environment to admit to having a learning disability. So I didn’t hear a lot from people on my campus, but when I kind of expanded my reach to online and started doing things on TikTok and Instagram and blogging online, then I did get a lot of positive response from people, which was really awesome. And the people who were close to me in my life are very supportive as well, which is awesome. So, you know, in terms of that, I did get a lot of really positive feedback of people saying they had dyscalculia and they felt really alone. And nobody, they’d never heard anybody talk about it before. Or like that, you know, they didn’t feel like people understood what dyscalculia really was and they, you know, wanted to continue to share like what the reality of having a learning disability can look like. And so that’s all really encouraging to see that what you’re doing is benefiting people.

Carolyn Kiel: Yeah. Well, that’s great. Yeah, as I look for guest as a podcast host and I try to find topics around dyscalculia. And I found like the only people where I could see it was people with dyscalculia talking about it were on TikTok, like, or most of them seem to be over there. Cuz, you know, Twitter, Instagram, or, or the other platforms, you can see people talking about the topic, but it’s, they usually are like educators or they don’t have it themselves. So yeah, it seems like TikTok is at least one good platform for at least sharing experiences on that topic.

Elena Chambers: Definitely, and I’m active on TikTok and I’ve met a lot of people with dyscalculia through TikTok as well. So I would definitely agree that that is where a lot of the people with dyscalculia seem to be.

Carolyn Kiel: So when did you start your social media? Was it around the time that you started writing as well?

Elena Chambers: It was around that time. So maybe it’ll slightly, slightly earlier maybe. So I would say I, I started on TikTok in April of 2020. So, you know, again, I downloaded the app sort of when everybody else was, maybe a little late. But pretty much, you know, around the time when TikTok sort of became to be something that people were talking about and stuff like that. And I didn’t necessarily have any intention of posting anything. I thought I was just gonna watch other people’s videos.

But I realized that there was this opportunity to educate people on a platform where my videos could be seen by a lot of different people. And it would wouldn’t just be limited to the people who I knew personally. And so I started posting about dyscalculia and so I’ve been, yeah, and I’ve been doing that for the last three years and it’s been, it’s been a really great experience. I’ve connected with a lot of great people, which is awesome as well.

Carolyn Kiel: That’s cool. And do you do other disability advocacy posts or videos on social media too?

Elena Chambers: Yeah. So I have an Instagram page that I’m just kind of getting started right now, but talking about similar things. Disability, dyscalculia, stuff like that. And then I have my blog. And I was, I had a YouTube channel for a short time, but I have sadly not posted anything there for a little while, just cuz editing the videos and everything was such a daunting task, but I’m hoping to get back to that as well.

Carolyn Kiel: Yeah. It’s hard to be on all, like, all the platforms at once. So yeah, it, it can be daunting to do that, but that’s great that you have a really wide presence across social media and your writing as well, so that’s really, really cool.

Elena Chambers: Thanks.

Carolyn Kiel: Good. Cool. So yeah, Elena, how can people get in touch with you if they wanna read your writing or your blog or just see your videos, things like that?

Elena Chambers: Yeah, so my blog is DyscalculiaCommunity.wordpress.com. You can also get in touch with me through Instagram, and my username there is ElenaChambers dot advocacy. And then you can find me on TikTok under at ElenaChambers. And yeah, feel free to reach out and let me know if you have any questions or any shared experiences with dyscalculia or anything.

Carolyn Kiel: I’ll put those links in the show notes so people can get them easily from there. Elena, thanks again for being on the show. As we close out, is there anything else that you’d like our listeners to know or anything that they can help or support you with?

Elena Chambers: Yeah, I mean, I think just part of my overall goal in being, you know, on the internet and providing information about dyscalculia is just to bring more awareness to the fact that people with learning disabilities are experiencing challenges that the rest of the world might not always see. So I would say the main thing is just, you know, encouraging people to be compassionate and patient. If you meet someone who seems to be either struggling with something that you don’t understand or have a life timeline that doesn’t conform to your expectations or something like that, to just, you know, keep an open mind. Because there are so many different kinds of people in the world and so many different kinds of brains in the world, and we’re all different, and there’s not just one way to exist in the world. So I think that would be my main thing.

Carolyn Kiel: Absolutely. Yeah. Really important points to remember. Well thanks again, Elena. It was great talking with you today.

Elena Chambers: Thank you so much. Great to meet you.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend. Give it a shout out on your social media, or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at beyond6seconds.net. Until next time!