The Problem with Overcoming: Learning to Value Your Differences

Natalie Tamburello:
Welcome everyone. If you are here for our first ever livestream episode for our Voices of Compassion podcast, you’re in the right place. My name is Natalie Tamburello, and I am on the Community Connections team here at CHC. And for this episode, we are really excited to be partnering with the National Center for Learning Disabilities, and also we are sponsored by our very own Schwab Learning Center, and in this episode we’ll be discussing some of the unintentional negative messages we encounter as we’re encouraged to overcome rather than embrace our learning disabilities or differences. So tonight you’re going to hear some personal stories from some alumni of the NCLD Young Adult Leadership Council, about their LD acceptance journey.

Before we get started, I’m gonna go over some quick logistics, and give a little intro to CHC to those of you who are new to our community. So, this is a unique opportunity. This is our first live recorded podcast that we’ve ever done, and that means that you all get to ask questions, those of you who are here live with us today. Alright. I’m gonna give a little bit of background on CHC for those of you who don’t know. We’ve been serving the Peninsula and South Bay and actually all of the Bay Area for the past 70 years. And we have four areas of focus, which are ADHD, learning differences or learning disabilities, anxiety and depression, and autism. Our specialty is really the intersection of mental health and learning. So a lot of organizations only focus on one or another. We really believe in focusing on both and on that intersection. So if you have any questions about CHC, I’m happy to answer them at the end. But I’m gonna give a little bit of just a short background on our five areas of work. So first of all, we have a Clinical Services department, which is all of our evaluations for mental health challenges, therapy, consultations. We have an intensive outpatient program, speech and language, occupational therapy, et cetera. We have a lot, and it’s from birth to 25. These services are primarily in California, but our Community Connections and our Schwab Learning Center, both are starred here, are available to people who are not in California. So if you are in New York or in another state or Washington DC, you can access some of the services provided by the Community Connections team and the Schwab Learning Center.

Community Connections is what we do. So this is what the podcast team is a part of, the Community Connections team. We also have an online Resource Library. We have Parent Support Groups. We have Collaboratives. These, a lot of these opportunities are virtual, obviously podcasts are, and so are the parent support groups. So if you’re interested in those, you can check them out on our website. And then there’s the Schwab Learning Center, which is our sponsor tonight. The SLC is specifically for high school, college students and adults with language-based learning disabilities and ADHD. We offer evaluations and then also learning specialist support, especially for transitions from college to work or high school to college. And again, those are also, services are available to people outside of California. And then lastly, we have two schools. We have the Sand Hill School and the Esther B. Clark Schools. The Sand Hill School is for students with language-based learning disabilities, grades two through eight. And then we have Esther B. Clark schools, which is a non-public school system with students with emotional and behavioral challenges, and that is K through 10. That’s a lot. I know that’s not even scratching the surface, but I wanna get started on the content for tonight, which is our wonderful guests from NCLD. So, I’m going ask you all to introduce yourselves by stating your name, your pronouns, where you live, what you’re doing for work now or school, hobbies, passions, interests, whatever you wanna share, and then just a short version of your identification story around LDs or mental health. And just so people know that they have a little roadmap to follow about you. So I’m going to let Misha go first.

Misha Nicholas:
Hi everyone. I’m so excited to be here. My name is Misha Nicholas. I currently live in Maryland. I go by the pronouns she/her. And pretty much right now I work for an NGO whose mission is to uplift and support immigrants and refugees in the US but also too around the world, but on the side, I also do do side initiatives. Recently I was in a competition globally and I won, and now I’m representing North America, and actually my call was to uplift the global neurodivergence community. So I’m really excited for that, and just to give you a little info about what I’m gonna be speaking about tonight, it’s really a story from the time I was in elementary school all the way through my college years of being an undiagnosed student with ADHD and ASD and not really understanding the concept of what neurodivergence was. So I developed anxiety and depression as a result of that. I won’t go further into the logistics, but that’s just a little taste of what I’m gonna be talking about and how I overcame it.

Natalie Tamburello:
Awesome. Thanks Misha.

Rachelle Johnson:
Hi everyone. My name is Rachelle Johnson. I use she/her pronouns. I am dyslexic with ADHD and anxiety. I currently live in Florida. I am a PhD student at Florida State University where I research the emotions children experience while learning to read, especially those with learning disabilities. And a bit of my background with learning disabilities, I was fortunate to get diagnosed early on, in second grade, but showed signs of difficulty with learning very early and struggled throughout school. Eventually I, did get, I was on an IEP for dyslexia all throughout K-12 and for ADHD and struggled for most of that time. By nine, I eventually developed anxiety as well due to academic stress in the classroom and feeling pressure to achieve in a setting where I didn’t feel always supported or I had the capabilities to learn. I now, after growing up in community with learning disabled people, I eventually went into advocacy starting in high school and have stayed doing that, wanting to help my community and today am a researcher of learning disabilities and continue in advocacy so that we can help all students with learning disabilities achieve.

Natalie Tamburello:
Awesome. Thanks, Rachelle.

Stevie Mays:
Hi everyone. Thank you for being here. My name is Stevie Mays. I use they/them pronouns. I grew up in the wonderful state of Michigan. I then for my career have moved to Washington DC where I’ve worked in a variety of spaces within the disability community, if you will. I worked in the space of disability advocacy for about three years, and currently am working more in spaces as a support role for disabled folks. Currently working for EasterSeals as a respite worker, which is a fancy term for personal assistance for families who are in the Navy and have a disabled child. Additionally, I also very proudly work with an alternative, augmentative alternative communication group called Reach Every Voice where I teach groups of autistic folks, kind of like a social hour type thing where they have time to be with peers to practice typing. I’m also very excited because in the fall I’ll be starting a Master’s in rehabilitation technology, which feels very aligned with my goals.

In terms of my LD journey, I was diagnosed in second grade with a few different learning disabilities, dyslexia, dysgraphia, dyspraxia, and I was also diagnosed with ADHD, but that diagnosis was not treated at all when I was growing up, which I think has contributed to some of my struggles through adulthood, if you will. And, for me, I had some pretty intense experiences in middle school about learning about what my disabilities were and it really negatively impacted me and then greatly influenced my mental health from thereafter.

Natalie Tamburello:
Yeah, it’s really interesting because all of you have chosen careers, obviously based on your own personal experiences. And I know we’ll get into that in a little bit, but I also think it’s only fair that introduce myself a little bit too cause I’m asking all of you to be vulnerable. As I said, my name’s Natalie Tamburello. I work at CHC, and I’m also dyslexic. I was diagnosed in beginning of second grade, I believe. And due to the fact that I was basically not welcomed back to the school that I was currently in, I was told that I was uneducable, and wasn’t diagnosed with anxiety until my late twenties. So I really identify with Stevie’s experience of not getting identified with the mental health, challenge or other health impairment until later in life. And also Misha, I think that’s very common, amongst, high functioning people with learning disabilities, that the mental health stuff happens later or is identified later. But anyway, we’re gonna get started on our questions, and here’s the first one, and I’m gonna ask this of Misha first. What has been the impact of the pressure to overcome your disability?

Misha Nicholas:
So I gave you a little synopsis of just kind of my life as an undiagnosed individual. So I got diagnosed at 25, right? So up until this moment, I didn’t even know what neurodivergence was. I just thought, what is the pressure to be normal, right? Whether or not that was being programmed just to study harder for tests or turn in assignments on time, it solely developed into an anxiety actually where, because I didn’t know that, I had ADHD or ASD, it was forced contact with people and really programming me to mask who I really was. And going into I believe elementary school is when I really started to feel anxiety, the correlations between anxiety and perfectionism, right? In particular for my ADHD, for example, if something wasn’t submitted on time or, I just had a really hard time concentrating in class, I had a teacher pull me aside and ask, “Okay, I see you’re trying really, really hard, but I just don’t understand why you’re not doing well in math or reading or writing.” And I said, I have no idea. and whether or not that was intentional or not, not throwing anyone under the bus, of course it slowly started that anxiety, slowly started that depressive, I guess you can say, sorry, I guess you can say episode of me just trying to understand who I was. And this actually elongated pressures not only from neurotypical individuals, like that experience I shared with you with my teacher, but also from undiagnosed neurodivergent individuals such as my parents. Which I’ll give you an example. My father, he said to me, for a job application, this was a little recent, like a year ago, you shouldn’t put that you have a disability, check mark on it just cause of the stigma that it might get, or my mom jokes around, right? That, oh, I’m, I have ADHD, I’m undiagnosed, but when I ask her, why don’t you get tested, she’s like, “oh, like, that’s just life.” And I think just to sum all up, these experiences that I’m sharing with you are just the subliminal pressures I feel like that undiagnosed and diagnosed individuals experience every day, from, again, neurotypical individuals or neurodivergent individuals who are just trying to navigate, I guess, in a neurotypical space of what is “normal” and what isn’t normal. Which can, as a result, develop into high developing stressors like anxiety or depression that can be left untreated, until your later years, which is my situation. So it’s just a little sum yeah, of some of my experiences that I endured.

Natalie Tamburello:
Rachelle, Stevie, anything to add?

Rachelle Johnson:
Yeah, I think that it’s really interesting, Misha, especially hearing from you as someone who is late diagnosed and being someone who was early diagnosed, knowing that there was still this pressure to overcome, but it was different. There wasn’t as much emphasis on, yes, I want to be normal, but that always was kind of an unachievable, but appear as typical as possible. And being, having that label, which is definitely important and I’m so thankful to be labeled, got the diagnosis, but the intention always, especially being dyslexic, was always on, getting me to not be dyslexic anymore, getting me to read better. And as someone who studies reading development, obviously, I think that reading, getting dyslexic children to read is so important, but when all the emphasis is not on getting dyslexic children to read, but getting dyslexic children to not be dyslexic, it becomes an impossible standard. And there, at least for me, it wasn’t always the normal thing, but it was, this disability, we acknowledge it, but we’re gonna overcome it. It’s a challenge you have to face and we’re gonna overcome. And then getting to the point of being like, no, that’s not the goal. I think the goal for at least dyslexic children specifically is getting them reading as best as possible, but I think reading is just one aspect of a quality life that now I try to pursue, while also acknowledging I’ll always be dyslexic.

Stevie Mays:
I found for myself that, my sense of perfectionism has kind of felt like a pendulum a bit where there have been periods of my life, where I practically, in high school especially, I disengaged completely as a student. A main contributor of that was very intense depression that was not being caught or recognized, by my community, I guess and it was interesting too because the educators in my team were aware that I was underperforming based off what my test scores, quote unquote would’ve suggested I could have been performing at. But no one ever, my mom eventually caught on and said, yeah, no, I think you need a therapist, but, my teachers and school counselors just did not address at all these underlying mental health issues that I was experiencing. It wasn’t until my senior year of high school when I started self-advocating for myself with educators, especially after my IEP got taken away, cause then they had no idea I had disabilities until I told them. So once I started openly identifying with teachers, I found that they were so receptive and excited to help me learn, in a sense, or at least see me be engaged at all that it became a, positive loop, positive feed loop, but then I do wanna share that by the time I reached college, I felt like I just really had a need to achieve and continue to succeed, but then it reached a point of toxicity where I was so focused on getting the highest GPA possible to try to become a researcher and all that sort of stuff that, I burnt myself out completely by the time I reached my last year of college, which then made my mental health way worse again. So I’ve come to embrace a sense of, not taking it too, too seriously and frankly not becoming too competitive, cause it’s, I think it’s toxic for anyone, but I think especially for folks with learning disabilities and mental health conditions, it becomes debilitating.

Natalie Tamburello:
Yeah. There’s nuggets I’m taking away from, from each of you, like with Misha I think the fact that you experienced something so similar to those of us who do have the label tells you how pervasive the feeling of being othered is, regardless of whether you have a label or not. And then with Rachelle, I feel like this pressure to overcome, I think, when I talk to most students or adults who are, in their twenties or thirties, a lot of them said, “Oh, I had dyslexia,” or “I had ADHD.” And it’s very contextual to school because they were taught that this is something you overcome within your educational experience. And then when you enter into adulthood, it’s somehow magically cured, and that’s a really negative message, assuming that you are something to be cured, and overcome in some way.

And then Misha listening to you talk about, how hard it is to navigate without an IEP and talking to a teacher and advocating for yourself. Like, in some ways, that tells me that we don’t need to necessarily medicalize learning disabilities in like, you can advocate for yourself and it’s an identity. And sometimes taking that power back as a form of identity is really important, in learning to embrace it rather than, yeah, having it be something medical to solve or to cure. That’s just my, my takeaway from this discussion so far. Anything else to add before we move on to the next one? No. Alright. Our next question is kind of the opposite of this. So throughout your LD journey, what does it look like to embrace your disability? What does that felt like in comparison to the overcoming, and how has that impacted your life? We can start here. Let’s start with Rachelle.

Rachelle Johnson:
So I think the best thing that happened to me and set me up for success as a learning disabled person was the fact that I was lucky enough to grow up in community with other learning disabled people. A majority of my friends have learning disabilities, ADHD, and then a few with autism. And I think that being surrounded by those people who had similar struggles, not all were diagnosed, but a good amount were. And that allowed me to always be very open about my learning disabilities and explore what that identity meant to me, I think was so monumental, but I didn’t always grow up embracing necessarily disability. I embraced my learning disabilities specifically as a child, and then in high school going into advocacy and realizing that my story was a part of the larger disability movement and disability community. And really learning that history, and seeing that I was a part of something larger, a part of disability, really has changed my life of how I see myself, the way I carry myself, the way I advocate for others. And I just wanna touch on something that you talked about when wrapping up our last question of like, I, graduating high school, would’ve used the word overcome to describe myself. I would’ve been like, I would’ve said I was still dyslexic, but I was like, “oh, I overcame that.” I got to a functional reading level, but I am still a very low reader, and I am reading currently at a middle school level as a PhD student, which is functional, but not, not really when you’re in a doctoral program and you have to, like… I can read directions, I could read a recipe, but you want me to read 30 page scientific manuscripts and something breaks down. So having to come to that fact of I didn’t overcome my dyslexia. I’m a successful person with dyslexia, but I struggle every single day and embracing that, but also seeing it head on and being like, I struggle. I can both struggle with my disability every single day, but also say this is core to who I am and how I orient to the world and part of history and community.

Natalie Tamburello:
I think that’s really interesting. Before, Misha and Stevie jump in. I think that that’s something that’s really lacking in our community is a shared history. And I think a lot of other marginalized groups have a shared history that’s passed on through generations and that, with the ADA only being, enacted in 1990, that we have a very short history. And then it’s also not documented. It’s a history of shame. So we’re like very early on, in our historical building of, a community instead of just a diagnosis. So that was just, that resonated with me, Rachelle.

Rachelle Johnson:
I will say I would recommend anyone to read books on disability history, that has been the thing for me of expansive disability history. We’ve existed.

Natalie Tamburello:
For a long time.

Stevie Mays:
I wanna jump off what Natalie just touched on because one thing that really resonates for folks with LDs or similarly invisible disabilities is that it’s not obvious to other people. And I think too, there can be this kind of, I don’t even know, sort of dancing around the embracing disability aspect. And I get that, it’s complicated for everyone and it takes time to get there. For me, I was able to start embracing my disabilities when I was in high school. I at the time was maybe like a D student across most of my courses. I was really frustrated, specifically though in science, that was the only area that I was able to excel in. And I was getting, I got two A’s freshman and sophomore year, and I petitioned to my counselors, I was like, “hey, look, like I really want to be put in advanced science classes.” These really interest and engage me and, what have you, but because of my standardized test scores in the area of science, I did not qualify, and they just wouldn’t even allow it even after teachers wrote letters. And I remember I was so frustrated and it just kind of, something clicked in my head. I was like, this is ridiculous. Like, I am interested, I am smart, and I want to be able to do this. And it’s just because of the basis of my disabilities. So from that moment forward, I started giving speeches on my dis… I should go backwards a little bit. I first found LD communities online. And I also found disability advocates. And that blew my mind. I had no idea that there was community, and I had no idea that there were people fighting for the rights of disabled people. I thought it was so cool. I was like, disabled superheroes. Okay, amazing. And, that’s when I started self-advocating with my teachers. And again, it just became a much more manageable experience to be a student from that point forward.

Natalie Tamburello:
Yeah, visibility is key, like seeing other people like you helps you understand who you are in relation to that. And when you’re alone in the world, it’s impossible to navigate and identify who you are within, the world that feels so rigid and normal and standardized. So this is really great. Misha, anything to add?

Misha Nicholas:
Oh, most definitely. I mean, after those amazing speeches, I have to chime in. going off of what both of them have, said about really advocating for yourself and how important it is. Unfortunately for me, I only started advocating for myself when I joined the Young Adult Leadership Council, a year and a half ago. Most of my life, even people who have been diagnosed, have just masked their unfortunately learning disability or their learning difference. And that was just kind of what I was adapted to, but interestingly enough, now that I’m advocating, for people with learning disabilities or attention issues, a lot of my peers, my friends, I’ve even had a director ask me, “oh, what is neurodivergence? I’m very intrigued to know this.” So it’s so important, especially for our community, to really advocate for ourselves because it could be like my situation right when I was later diagnosed. It doesn’t matter how old you are, it’s just really joining the fight, to just get equal rights. It’s so important. And the more I fought for myself last year, the more I’m like, I have self-confidence, and I can really, educate other people. Unfortunately, I’ve heard things like, oh, you don’t look autistic or, oh, ADHD, like, you don’t do these mannerisms. When you just have that comfortability to politely address, right, stereotypes or notions, it can quickly, in a snap, just change someone’s point of view completely. And I think, like you’re saying, Natalie, we’re in a bit of a new wave, I feel when it just comes to this movement. And it’s really, it’s really exciting to be a part of, I’m not gonna lie, like even, here and there, I do hear bits of like people self-advocating for themselves now, who I know who would have suppressed their learning disabilities. So yeah, I think the journey has been a little bit unheartening, masking myself for most of my life, but now I’m ready, I’m ready with Stevie and, Rachelle, to not revolutionize, of course not join a revolution, but to make a change.

Natalie Tamburello:
I don’t wanna put words in your mouth…

Rachelle Johnson:
We’re like, yeah, we could do that, I think we are doing that Misha, I don’t know what you’ve been calling what we’ve been doing.

Misha Nicholas:
I mean, I don’t wanna, assume anything violent, that that’s where I was trying to get at.

Natalie Tamburello:
Peaceful protest. Peaceful protest.

Misha Nicholas:
Yes. Yes. Yes.

Natalie Tamburello:
But Misha, I don’t wanna put words in your mouth, but it sounds like to me, and I’m thinking in terms of a parent or an educator when you were young, I bet you, I’m betting there were educators in your life who were like, you know what, I think something’s going on with Misha… but decided not to do anything. And I hear this a lot, from educators saying, I don’t want to complicate their life even more. Like, I don’t, I don’t wanna add another label or another… I don’t wanna marginalize this kid more than they already are. So I’m just curious what you would say to that cause it seems like you’ve got a lot of power from that label and power from the vocabulary of being identified with ASD and ADHD.

Misha Nicholas:
I always advocate for actually teachers to be involved because if I could have been diagnosed way earlier in life, at least with ADHD, I’m undiagnosed with ASD, but something, it could have changed my whole life around. I mean, I really struggled in school, and I just thought internally it was a me thing when really no, like girl, you have attention issues or a learning difference. So it would’ve changed things completely, and I advocate for teachers to do something, honestly.

Natalie Tamburello:
I second this and I don’t even know Misha that well, but definitely ADHD sprinkled in there. So it, yeah, it, it’s hard, it’s hard to imagine that that was ignored for so long, but understandable. It’s not a new story, so, but just still hard to hear. I’m gonna move on to the next question.

So this is where we’re talking about the intersection of, mental health and learning disabilities. And some of you have already kind of talked about this a little bit in your introductions, but if you can go into more depth about what your experience was with mental health challenges in relation to your learning disability, and what has it been like to navigate both? And we’ll start off with Stevie here.

Stevie Mays:
So for me, beginning of my depression and anxiety are intrinsically related to my learning disabilities. I’m not an expert on this topic, but I’ve heard biomedical models. So sometimes… or the nature-nurture, that’s what I’m looking for. The nature-nurture dynamic where, anything could have triggered depression or anxiety within me. However, in my experience, specifically my first depression episode, I can recall the day and it began when a Catholic high school denied me access to the school exclusively on the basis of my learning disabilities, and it was explicit. And that was also the first time I had heard, my diagnoses listed out. I knew I had some sort of disabilities that was apparent because I was pulled out or I did tutoring. And, I actually figured out I was dyslexic two years prior by watching the George Lopez Show and they had a special episode on dyslexia. And I was like, well, I definitely have that, I know that much, but I just remember sitting in this meeting and they said these other diagnoses, they said dyspraxia, they said, dysgraphia. And I remember the room just practically started spinning, and I remember in my mind being like, trying to log those words in so I could attempt to Google them later, which newsflash dyslexics, it’s not cool to try to spell out those words, like, I could not figure it out. But that led to my first depressed episode that went unnoticed for about four years of my life, of like most of my high school experience I was so deeply depressed. And luckily now, probably partially due to, medication, but outside of anything academic triggering my depression, I don’t get as depressed. I can still become depressed, but nothing triggers a deeper depression for me than something academic and learning disability related. So it, and then, with then the perfectionism that creeped in my last year of high school and then in college transferring to a bigger 10 university and, really wanting to excel and prove my… is what it felt like at the time, that made my anxiety horrible over grades. I, throughout my whole life, I didn’t know until college or post-college, it wasn’t normal to have a panic attack before every assignment, before doing every homework assignment. And it’s just wild how those things can be normalized within a family because, I remember I talked about it with my mom one day. She’s like, “oh, well I puked before every exam,” and it’s just kind of like, whoa, that’s also not normal. So those things that were missed because it was so normal within my family. and just I guess maybe within the academic culture that a university can be, it becomes pretty toxic pretty fast, if not checked and especially not checked in on. I feel like, our doctors and counselors and teachers don’t even, it may not be obvious to them or they may not see it as an outsider view, but I feel like that should be a normal part of check-in and wellness and all that.

Natalie Tamburello:
Yeah. One thing you said around trying to prove your worth, like really sat with me. And I think that’s like the whole topic of this podcast today is that overcoming assumes that your worth comes from decreasing one part of you and increasing the parts that are more valued by society. And I think what we’re all trying to say here today is that your worth is in your disability. Your worth is in your difference, not in trying to suppress it. And I think even though we might not be explicitly taught that by our educators, some of us are, or our parents, it’s very implied through a lot of the language we use and a lot of remediation we go through. And I think any efforts to try to combat that inherent, implied negative nature around your learning disability or ADHD or autism, whatever that may be, is so important. And just really thinking about the words you use, really thinking about what you’re valuing in your students. Anyway, thanks Stevie.

Rachelle, Misha?

Misha Nicholas:
I definitely have something to add. It’s just, sorry, that speech was so powerful, man.

Stevie Mays:
Thank you. You’re sweet.

Misha Nicholas:
It was, it was really powerful. And just to build off from what Stevie said, definitely if anxiety is left untreated, it can really cripple not only your self-esteem, but how others can perceive you. And, in particular, I mean this is in college, when there was the exam, everyone would be so anxious, they would have panic attacks. And then, while I’m in the process of that, my neurodivergent side is like, okay, so someone’s having a panic attack, I’m having a panic attack, but I’m not sure if that’s because it’s like a group thing or it’s because, I’m late for an assignment. So I just think even being in that state of confusion, amongst your neurotypical peers and your neurodivergent peers was really, really… not a turbulent time, but interesting to identify. I think that’s when I started to realize, okay, like there’s definitely something up with me when it comes to me studying in the library for excessive hours and getting burnt out, right, but then getting like a C- on an essay. And once again, what Natalie stated is, it’s so important to embrace your learning disability and for those who are diagnosed, for example, like don’t view it as a weakness or something that, you have to suppress. I mean, we just live in a reality where we have to advocate for ourselves. We have to address our learning disabilities and mental health issues as well cause otherwise, in some cases some people might not know, right, on the outside lens, especially if you have an invisible disability of why you’re having panic attacks in school or why you’re hyperventilating when you just can’t, perform your speech right in speech class, right? So yeah, navigating both of those identities, I think, especially during my college years was really interesting I can say for the most part.

Rachelle Johnson:
I feel like for me, yeah, anxiety has always been a part of my learning disability experience. I started having weekly panic attacks in the classroom at age seven, which… and then I was diagnosed with anxiety at age nine, which like, children have anxiety as children like that, but the fact that someone, often it’s missed. Someone looked at me, like my teacher was like, get that one an evaluation. It was really bad. And what was written actually on the evaluation was “a fear of being left behind.” And specifically I had this fear of being left behind intellectually. I was so… like if I was sitting, let’s say in math class and we went over one slide and then the teacher flipped to the next slide, and I didn’t understand the one before, I had this feeling because of my experience with learning disabilities of, if I didn’t learn that last slide the entire class was going to learn all of the math, and I was gonna be left behind. And because I didn’t have that foundation from the slide before, I couldn’t do it. And I remember, bless her heart, my fifth and sixth grade special education teacher Ms. Price was amazing, and I remember looking in her eyes in like, late elementary school and her being like, what’s gonna happen if you fail this spelling test? And I would sit there and list it out. I’d be like, I’m gonna fail spelling test, then I’ll fail out of sixth grade, then I’ll never achieve. And then I’m gonna end up homeless and on the streets, and I’m gonna die. And I, also knew the statistics that learning disabled people were more likely to end up, incarcerated, more likely to be homeless, more likely to have adverse life experiences. So I was like, statistically, this is what would happen. She would just stare at me, and I would be like 11, and I was like, the world is ending, and you need to understand that this is true. And no one could convince me otherwise. My anxiety…I had anxiety, my primary diagnosis on my IEP in high school was anxiety, because that was the thing that was so disabling for me. All three were going on, but it just was such a part of that experience of feeling like I needed to prove myself. And if I ever slipped up, I would be abandoned completely and I would be written off as incapable. And that has followed me for a long time, actually at this point in my life, my anxiety is actually at the best place it’s ever been which is wild for me to be like, I still have clinical levels of anxiety. I always will, but for the past year for it to be manageable has been mind-blowing and amazing for me, but this semester, I realized the other day was the first time I’d ever… I just finished my second year of my PhD, and realizing this was the first semester I ever went through an entire semester that I can remember since second grade where I didn’t cry in a lecture.

Natalie Tamburello:
So why do you think that is? What’s changed?

Rachelle Johnson: I think part of it… so I feel like I bounce between two feelings in a PhD. So for context, when I was diagnosed at seven with dyslexia and dismal reading scores, the school told my parents directly cause my parents are very academically driven, always expecting me to go to college. And they told my parents that I was never gonna go to college and that I might graduate high school with a reduced diploma. And that was just the expectation, obviously my mother did not respond well to that. And that did not happen obviously.

Natalie Tamburello:
As she should, yeah.

Rachelle Johnson:
Yeah. But I feel like I bounce between… and more so bounce in between this next one, the first one of like, I need to prove myself, and I can never slip up because if I slip up, like everyone’s gonna know I don’t belong here. I wasn’t supposed to even go to college, like, what am I doing here? But also realizing now I have achieved more than anyone ever expected, more than I ever expected of myself, and I have pretty high goals for myself. So realizing I don’t really need to prove myself. I’m in this program, I’m doing this thing, also, being very upfront about just communicating my needs. And I was in therapy for a long time and before I went to grad school, I was in therapy specifically talking about my learning disabilities for a long time of a year and a half before going to grad school, talking about like, I needed to work through this academic pressure I was putting on myself. But yeah it’s been so interesting and, yeah I did cry after class sometimes, but never in the lecture, which is such an improvement. But, yeah, it’s definitely now shifted towards the, like, I don’t have to prove myself, because I’m doing the thing every day, and it’s still difficult.

Natalie Tamburello:
Now I was wondering if that was what you were gonna say, and I think you’ve all kind of said this at some point, is just this, there’s this inherent need to prove yourself, but I do think that there’s a point that we all reach, hopefully, eventually, is that you get to the point where you, realize, wow, I’m doing the thing that I wanted to do or maybe it’s not the thing I wanted to do, but I found my place, and I found my thing, and I don’t need that anymore, like, I don’t need that validation from other people anymore.

Rachelle Johnson:
But even realizing that even if I wasn’t in this PhD program, like, it’s okay.

Natalie Tamburello:
Yeah, right. Exactly.

Rachelle Johnson:
Like we don’t, we don’t need to prove ourselves. We don’t need to prove that we are worthy to take up space as learning disabled people, like Misha was saying with the last question, it’s revolutionary just for us to be loud about being disabled.

Misha Nicholas:
Just living life, you know. One step at a time.

Mike: CHC’s Voices of Compassion podcast is made possible by the generosity of people like you. To learn more about supporting CHC, go to chconline.org/donate. Also make sure to follow us on social media for more inspiring and educational content from CHC.

Natalie Tamburello:
So our next question is kind of our pie in the sky wish and a prayer, which I guess leads to the revolution you’re all trying to start is what do you wish your LD mental health journey had been like, if you could draw it, if you could design it for yourself, what experiences that went wrong could have gone a different way? Like if you can get specific here, I think that would be great, for what experiences do you wish had gone a different way and what would they look like?

Misha Nicholas:
Oh, I’ll start this off. I definitely think if my parents were more compliant with teachers about actually putting me in an IEP and not kind of fighting it, it definitely would’ve made the process a lot smoother. Unfortunately, especially within the black community, there is a huge stigma about learning disabilities and differences and equating it to not being intelligent. And unfortunately that’s kind of the thought process that happened with my parents. So, definitely. And if teachers, I’m not sure how you could advocate in that space, like if your parents, sorry, a student’s parents, right, are saying we don’t want our child to be in an IEP, but they need to be in one. I’m not sure how that would work, but definitely some mediator, I don’t know, like a counselor or something to navigate a situation, would’ve been great.

Then secondly, even being in specific classrooms, I just remember being so young and I was taken outside of class, and I was taken to speech therapy or I was taken to…

Yeah, like math tutoring, but I didn’t know why I was there. Teachers, please tell their students why they’re in specific classes. It’s the elephant in the room, right? Like you’d be surprised, many people… please don’t be vague. You’d be surprised…

Rachelle Johnson:
We all know we’re in the lowest reading group…

Misha Nicholas:
It’s okay, right? And then I think the third one would just be, at least when I was in school in my environment, neurodivergence was like, it honestly was like, what is that? I mean, it wasn’t talked about and unfortunately people had the feel… or felt the need to really mask it. Schools, please, let’s bring awareness to neurodivergent rights as well. I mean, you think it’s so obvious, but it’s not even in health classes. I mean, being undiagnosed, I didn’t even know what that was cause I thought, oh, maybe something in mental health and health class would talk about important topics that were happening in my life, but I didn’t hear anything about neuro diversions. I just heard about like, puberty and what to do at a party and just like really insignificant things.

So I think definitely, yeah, improving the health curriculum in neurodivergence. What about the others? What do you guys think?

Natalie Tamburello:
Well, I have a question for you first, Misha. I’m wondering, were any of your teachers or educators black and would that have made a difference?

Misha Nicholas:
No, honestly, all of them were white. I definitely think to a certain extent it would have, when it came to that instance of, a teacher pulling me, aside and being like, “okay, there’s obviously something up. We’re gonna set up a meeting.” I think that definitely could have been a game changer for sure. Yeah. For sure. So more inclusivity. We, again, like more black neurodivergent health counselors or, teachers, practitioners. It’s just so intersectional, but it really makes a difference. It really does.

Natalie Tamburello:
Yeah. Rachelle, Stevie?

Stevie Mays:
I wish very similar points to what Misha was speaking on, which is that I think my experience would’ve been revolutionarily different had there not been so much shame and stigma around disability and the sense that it must be kept quiet. So, I feel like, when I think about the fact that my parents hid my diagnosis from me for about five years until it was revealed, surprise revealed, that was unnecessary and…

Natalie Tamburello:
Like an LD birthday party.

Misha Nicholas:
Peekaboo like…

Rachelle Johnson:
Except for you’re denied admission.

Stevie Mays:
I should have a cake and just like cake myself every year, that’s how it felt. Yeah, it would’ve been way better. but I even think too about, and I mean, I’m not necessarily saying this is the way to go, but the way that disabilities are handled within schools, it’s very critical we keep it a secret and we don’t divulge that a student’s disabled or whatever. And I get that if a person, to each their own, and especially as a kid, you don’t wanna be othered, but at the same time, what if we could picture a school system where we talk about disabilities upfront and we say, “hey, like, in this classroom there might be someone with such and such disabilities, so I’m gonna do this, this, or that within the classroom space to make it accessible for everyone.” And it actually benefits everyone for this reason. And to also even celebrate significant days within disability history. we have the beginning of the 504 protests that’s actually I think today, it’s either today or tomorrow that was the last day of the 504 protest which quickly, if you don’t know, a bunch of disabled folks let protests across the country, but then there was one in San Francisco that lasted 30 days in occupation of a federal building that led to the passage of the law 504. So that’s like the coolest facts ever. Why aren’t we talking about that more? And I think it would, allow for more self-acceptance around the topic.

Natalie Tamburello:
Yeah, the shame of the label is just crazy to me. And I think the more we talk about it, the better, but Rachelle, go ahead, but I don’t wanna step on your toes. Go for it.

Rachelle Johnson:
Yeah. So I just wanna talk about first, with you two talking about wishing that it was talked about, what your diagnoses were like as someone who did have that and thinks that that was just pivotal in my experience of that, I did grow up being told like, this is what your disability is. And, I could at nine tell you all about dyslexia and define it, but there was always still this pressure, yeah to like, it’s okay, you have dyslexia, you have this thing, but we’re gonna, we’re gonna fix that, don’t worry. Like, you’re not gonna be always struggling. And I wish that there had just been… there was always acceptance of my learning disabilities in a way that they were matter of fact, but not this radical acceptance of disability, if that makes sense, that differentiation. It was like, yep, you’re dyslexic and we’re gonna fix that, but like, that’s not exactly the same thing as radically accepting neurodiversity and disability and the idea that it is okay not only to be different but have a disability and have limited abilities in certain areas. And I think what that would have been so big for me, was just having also disabled mentors in my life. And I think that’s something I still struggle with now. I’m always, if you’re a dyslexic, dyslexia researcher out there, reach out to me cause I’m looking for so many, still looking for dyslexia mentors. Just cause growing up, the only people I had were like, actors or they’d be like, Einstein. Einstein was not dyslexic, he was reading at like four, like people would just give out CEOs and people I could not relate to. I was like, well I don’t, I don’t wanna like..

Natalie Tamburello:
A near peer.

Rachelle Johnson:
Yeah like this rich person who’s a big CEO, like, okay. I wanted to know the biggest… like my seventh grade math teacher was dyslexic and he owned it. He, first day was like, I’m dyslexic. And he was the first person I ever saw laugh at his dyslexia, in such an affirming way. And he is like, yeah, I can’t spell. And I was like, me neither dude, but I think having those type of mentors and now being an adult and people telling me I’m the mentor, which is fine. I love mentoring people, but I’m like, I’d also like a mentor.

Natalie Tamburello:
Yeah. That’s part of also why I’m so out. People ask me like, oh, why are you out as being dyslexic, like people can discriminate against you because you’re out, and I could hide it well enough, and I’m like, I wish I saw people as a child being out. So I think having that radical disability acceptance, watching people just embrace being different and having difficulties.

Yeah, I think we forget sometimes that our society is really built around reading, which is something that our people did not do for a very, very long period of time. and also built around paying attention and also acting cordial… act, speaking when you’re spoken to, very specific things that are like, they’re created, they’re not, they were a choice that were made. And that doesn’t mean that because you don’t fit within that very narrow spectrum of valued traits that the other traits aren’t also valuable. I mean, I always play around with the idea of what if we all just… most of tests were music based or visual arts based, and then all the readers would just be screwed. That’s just… and then they would be the people with a disability. And so I try to remind myself of that. Like, it’s not a personal issue that I have. It’s a societal issue and it’s their job to serve me because they did not build a society for me and trying to place blame instead of on myself, which I think is really hard to do as a young person. Easier to do as an adult on, systems in our society that perpetuate disabled culture. So yeah.

Rachelle Johnson:
There’s such value on people who speak well and read well.

Natalie Tamburello:
We’re all speaking well right now, though, so it’s, we’re…

Rachelle Johnson:
Yeah. But just small things. Like someone will be, someone will go off saying oh, that person had a bunch of spelling mistakes in that email, so why would I respond? Or just seeing that as a value of, who can read is the person who is valuable or someone who can write well.

Natalie Tamburello:
Rachelle, if…

Rachelle Johnson:
It’s scary.

Natalie Tamburello:
You feel comfortable, I want you to tell your story about your thank you notes.

Rachelle Johnson:
Oh yeah. So this is a story of… so I can’t read very well. I could read but not well and write, but my handwriting is awful. Actually it was something I was self-conscious of as a child, especially cause that was a thing that kids were valued, especially girls, being a girl growing up, were valued on handwriting. So it was, oh the boys all are bad at handwriting and they’d always hand me the notes in class, but anyway, so when I graduated high school I had to write all those thank you notes to everyone who sent me money or came to my party or whatever. And I was so afraid cause I couldn’t hand write those notes. And I typed them and I knew the social rule that you cannot type social thank you cards, they will get mad at you. So I legit, I typed them, I did more than any of my friends, like writing their notes. They wrote a script. I made every single one personal, of how I knew them, what they gave me, and how I appreciated them. Every single one wasn’t different, but I knew that they were gonna judge me. These were family members and friends who knew I was dyslexic. So I actually made a note that I put additionally slid into the card that was like, because I typed them, I typed them, cut them out and glued them to a special… I went above and beyond, anyway, a special card, and I put a note in it about dyslexia and I was like, before you judge me, remember I have dyslexia, and this is a more accessible version. Next time you see someone doing something different, such as typing a note, consider that that person might have different abilities, and this is an access need. And I just put that in there. And I had multiple… and I was so afraid that they were gonna judge me. And I had multiple, even family members reach out to me and say, you know what, when I saw your thing was typed, I judged you, my immediate thought was, oh wow, she doesn’t appreciate me. And then I read your note and it really made me reflect. They didn’t use the word ableism, but they were like, I reflected on how I judged disabled people. They didn’t call themselves ableist. And having people tell me, wow, I wouldn’t have even second guessed that I shouldn’t have judged you. And I’m so glad that you put that note in it because now I’m gonna think about that. So it’s just an example of our society, we put value on reading.

Natalie Tamburello:
Yeah. I know we have one question left, but I’m seeing a lot of questions in the chat and I’m thinking that it’s more valuable to answer the questions that people are here to ask. So, I think I’m gonna switch gears, and we’re gonna go to the questions that are being asked live. So if you haven’t put your questions in the Q and A, this is your time to do it. But I’m gonna start going through the questions that we have for our group here. So first question, did you all always want therapy or were there times when you yourself wanted to ignore your challenges? Good question.

Stevie Mays:
I don’t think I knew that I was, I don’t think I even thought of that as a resource at the time. This was also, back in the 2010s therapy might have become, might’ve started becoming more normalized, but I think we have easily forgotten that therapy was pretty regularly stigmatized, and it was thought to be for people that were quite mentally ill and kind of judged. I, do know that, I remember the first time my mom asked me if I wanted therapy my sophomore year, and I was just like, oh, like I didn’t say yes to her, but then when I thought about it later, I was like, hmm, yeah, I could benefit from that.

Natalie Tamburello:
You know what’s interesting is in college experience, I remember looking at statistics, I don’t remember what I was doing this for, some sort of research for grad school, I assume, but more people disclose mental health challenges than learning disabilities when you go to college, and it’s the opposite in high school. So it’s just that… I don’t just, I don’t know how you wanna interpret that, but it’s interesting. Yeah.

Rachelle Johnson:
That was something that was very weird for me as an early diagnosed person with anxiety. I knew what anxiety was at nine. I was like, that’s when I can’t breathe because I can’t do math. And then suddenly we got to like 19 years old and so many people around me were suddenly using these terms. And I never actually, I considered my anxiety a learning disability. Like it was so a part of my story that the idea of it not being a learn…, it just blew my mind when it started becoming acceptable, but it wasn’t acceptable to be dyslexic. So yeah. Like the LD kids used to be the cool kids… we weren’t actually cool. We had our little disability group and then suddenly, well we are cool. I’m saying perceived by others we weren’t cool.

Stevie Mays:
True.

Rachelle Johnson:
I think all four of us are pretty cool. And generally our community’s pretty cool, but yeah, and then I just remember sitting there dumbfounded that everyone was suddenly having this disability that I was like, I’ve been here. I wasn’t treated but I was there.

Natalie Tamburello:
Yeah.

Stevie Mays:
Really quick, I just wanna add, I can’t help but wonder if also LD people are less likely to make it to college.

Natalie Tamburello:
Yeah.

Stevie Mays:
And if that impacts anything.

Natalie Tamburello:
And I think, yeah, and also I think mental health emerges as we’ve all said, sometimes later. So that happens also.

Rachelle Johnson:
I think we also think of learning disabilities as something that impacts you, like K-6, and mental health is something that impacts you in your twenties, just who we think of as experiencing that and it could be that experience in your twenties because we’re having this new acceptance of mental health issues and the people who tend to accept new ideas are young adults, but it kind of seems like, okay, you dealt with that in K-12, and now you deal with your mental health, but it’s always been there for all the years.

Natalie Tamburello:
I saw this question in the chat earlier, and I was wondering if I should just interject it cause it’s kind of a one word answer and I think we’ll all say yes, but how often do you hear from educators you are brilliant, but lazy, or but something, there’s always a but. So I assume we all experienced that.

Stevie Mays:
I want the audio to describe that I just rolled my eyes.

Natalie Tamburello:
Honestly. Yeah. For those of you listening there’s a lot of visual cues going on right now.

Rachelle Johnson:
Weirdly, I wasn’t described as lazy as a kid, but I was told I was a little bit, but it was just like, you’re so anxious. I think the people I’ve noticed in the learning disability community, we take two approaches, and Stevie touched on this earlier and even I swing wildly from one to the other. We go either go, this is so hard, I’m gonna give up cause what is the point? Or this is so hard, and I will kill myself making sure I can do it, and I really swung towards the anxiety side of like, I will have a panic attack and keep going. So yeah.

Natalie Tamburello:
It is black and white. It’s very black and white thinking.

Rachelle Johnson:
I don’t know many LD people who handle struggling very well without going to one of those.

Natalie Tamburello:
…extremes at some point. Yeah, think finding the balance is really hard, and I don’t think that we’re very much supported in finding that balance.

Rachelle Johnson:
And I don’t think either is healthy.

Natalie Tamburello:
I think you’re pushed to one end or the other. That’s really true. Okay, next question. Do any of you find that the more you talk about your own journeys, the more others say, yeah, that sounds like me and what I deal with? Yeah, people come up to me all the time.

Misha Nicholas:
Yeah, actually people have seen my work and they’re like, hey, I just came out with ADHD, like, how do you solve this? Or, oh, I think I’m actually going to get diagnosed because what you have seems like what I have. It’s so common now, especially for women, that aren’t really being diagnosed until they’re mid twenties, even late thirties, it’s wild. So…

Natalie Tamburello:
Or people who are older who didn’t get the benefit of, I think anyone over 45 it’s, it’s hard to get identified.

Rachelle Johnson: Or the weird thing of, I’ve had a lot of people, I’ve been very out as dyslexic my whole life. And my entire life I have had peers come up to me and be like, I’m LD and no one knows, and I can’t have anyone know, but I want you to know. And it’s so interesting to me every time, like it happens to me now, I’m very out as being a dyslexic dyslexia researcher. I will have people DM me on Twitter. I love it when happens, and they’ll be like, me too. And no one in my program knows. I’m like, you’re literally researching dyslexia, it’s okay if you’re not on that journey to come out, but I think that being out makes people kind of survey the scene. They’re like, well, they’re doing okay, so I can…you show that the water’s safe. Sometimes that does mean that you have to come up against the sharks first, but yeah.

Stevie Mays:
I find, I feel like, oh, sorry. Oh I find that, for whatever reason it bums me out, but outside of NCLD, I don’t run into a lot of LD folks. I don’t know. I don’t know if, what about my magnetism or whatever, just I’m not around them enough, but I want more of that community just in my everyday to day life.

Rachelle Johnson:
I guess my special interest is learning disabilities, and I research learning disabilities for a job, so it comes up a lot, like I’ll be like, I studied dyslexia. They’ll be like, oh, I have that and I’m like, cool me too.

Misha Nicholas:
Stevie in our area, okay? The DMV area, I don’t know what it is. I’m very rampant about it, and no one… I don’t know….

Rachelle Johnson:
It’s those long legal documents, they scare the LD people away.

Natalie Tamburello:
It’s policy. It’s DC, it’s policy people, they don’t…

Rachelle Johnson:
Too much reading.

Natalie Tamburello:
I’m going to go to the next question cause we got a lot. So I’m trying to get through as many as possible, and I’m sorry to people if we don’t get to every single question. We’re doing our best, but I can’t promise, but we do have a chunk of time, so hopefully we’ll get to all of them.

Stevie, and Misha, this is a long one, so I might misspeak as I’m reading here. As a parent, I’ve seen my daughter who did well in high school develop a high level of anxiety in college away from home, which led to depression. Her autistic nature, along with her personality of not sharing what’s going on with her, complicated the issue. It took a while for me as a neurotypical parent to understand that. It’s unfortunate that I didn’t understand well at the time. What do you suggest regarding how to support my 23 year old daughter who is still suffering from anxiety and depression?

First of all, I want to give you guys a second to think about it, but, I just want to recommend if you can reach out to a therapist, even at CHC, we do support 23 year olds. So if that’s something, if you want a clinical answer to that, someone with a PhD or a PsyD, I would suggest that, but go ahead.

Misha Nicholas:
I think going into a bit, what Natalie says, definitely a therapist, but also how open that person is to sharing their daily experiences, I think is very crucial, and I think just establishing, I don’t know, that relationship of generally checking in on her, to see if like she’s okay. And then maybe transitioning, I guess, into the conversation without, pressuring that person would be ideal. But sorry.

Stevie Mays:
No, were you done, Misha?

Misha Nicholas:
No. Yeah, I was done. I just didn’t want the… I don’t wanna pause.

Stevie Mays:
I’ll quickly chime in. I’m kind of seeing this from two lenses. One is that I feel like I found especially that leaving my parents’ homes, I’m assuming the student is, yeah, they said the student’s away. That the ADHD comes into overdrive, especially when you’re first out of the structure of your parents’ house and outside of the structure of a school day where you go to the same singular building every day. And it’s a lot more to manage. And there is no college 101 course on how to navigate being a college student.

Also I’m sure as a parent you’re attempting this, but I sometimes get frustrated with my parents when I feel like they’re always asking me about work or my school or whatever, and I’m like, I really want to feel valued for other aspects of myself outside of being a student or outside of anything even achievement based, you know? And so I think really being intentional and saying, if you get a B or C’s or if you even fail a class or two, it’s okay, that happens. It’s part of life. Cause I don’t feel like we share that messaging enough and it’s not, I get that a failure, I guess a failure in a class is not something to celebrate, but I don’t know, if it saves your mental health, maybe it is.

Natalie Tamburello:
Yeah, the thing that keeps coming up for me is thinking about modeling. I think especially when someone is in their twenties, they’re kind of done with listening to their parents, but I think if you model the behavior you want from your kid, I think that helps sometimes. And just being a safe space for them to come to rather than trying to solve all their problems. Or have the answer or trying to fix it, but trying to get them to get to the answer, which I think is really hard to do as a parent. You just wanna fix and solve and oh, I know what to do here, so just do it. But teaching that skill of solving your own problems and just modeling the behavior in your own life, that would be my 2 cents.

Alright. Next question. It seems like the pressure to perform for grades was a precursor for anxiety for all of you, do you feel that the use of pass-fail or mastery grading systems would’ve helped that? I assume that you didn’t get graded on your careers, hopefully, and you experience a more supportive work environment. Interesting. I’m curious what you guys think of this.

Rachelle Johnson:
For me, it wasn’t always about the grades. And that was the thing about how they were always like, I graduated high school with like a 3.95 GPA, my grades were like, I did well in school for being LD. I’m just saying. So for me it wasn’t… that is the thing that still gets me upset today cause I’ll be anxious about a class, and they’ll be like, it’s okay, you’re gonna get an A. And I’m like, I know I was gonna get an A, but like…

Natalie Tamburello:
That’s not why you were anxious.

Rachelle Johnson:
I was anxious about knowing the knowledge and it was intrinsic motivation and not extrinsic motivation, which is different than some people’s…intrinsic is your own desire to do well. And then extrinsic is like rewards, because I knew myself I was gonna get an A, I was gonna do what it took, but the idea of, I give the example of math, of them going on to that next slide and me not having the knowledge and then moving on without me and me being left behind was the source of anxiety. And that might not be for everyone. Stevie and Misha might be different, but I think I would still just have the same amount of anxiety just because my goal was I didn’t wanna be left behind academically, I didn’t really care about the grades cause I was gonna get an A and if I got a B, like I did get some B’s, it was like I knew I was gonna do the best I could.

Misha Nicholas:
No, same. Like even if, for example, a teacher gave us a cheat sheet for an exam and I knew what was gonna be on it. It was just the fact that if she would repeat the answer in the question, it sometimes just wouldn’t register to me just because of how anxious I was to just do well. That sometimes really gets you on exams.

Natalie Tamburello:
Well, and I’m thinking about actually doing well created an anxiety for me because I thought, oh, they’re gonna take away my LD card cause I’m doing well.

Rachelle Johnson:
They tried that on me. They retested me and then they found out I was reading a lot worse than they thought. So…

Stevie Mays:
The audacity. Misha never got her official LD card from NCLD, right? They never…

Natalie Tamburello:
Oh, you guys…

Stevie Mays:
No, I’m making a joke.

Rachelle Johnson:
Are we card carrying members of NCLD?

Natalie Tamburello:
I do often wish there was an apparel line.

Rachelle Johnson:
Card carrying LD community members.

Natalie Tamburello:
Yeah.

Rachelle Johnson:
So then those who aren’t out, we just flash our a little card under a little like flash up right now.

Stevie Mays:
Yeah. Promoting future merch.

Natalie Tamburello:
Back to the point, meaning that the anxiety comes from, I don’t think, not feeling like you’re going to achieve, but by people not believing or not perceiving your worth.

Rachelle Johnson:
Mm-hmm.

Natalie Tamburello:
I don’t know. That’s it for me. Cause I was constantly worried that, oh, because I have As they’re gonna assume that I cheated or assume that, there’s no way that someone with this level of reading can do this, you know?

Stevie Mays:
I want to quickly speak to the career part of that question. I’ll keep it brief, which was, I have found navigating my career space that I really have to honor my neurodivergence and work with it, which for me, I have discovered means I struggle in an exclusively, office space job, which is interesting cause if you do the testing, I’m able to read at a relatively high level for a dyslexic, and I can seriously write decently, especially for someone with dysgraphia, but it drains me. And even though I can do it, it does not work for me in the long term. So I’ve had to shift my careers to be more at least mixed with movement or mixing up the task so it’s not all behind the desk.

Natalie Tamburello:
And that requires a lot of self-awareness. There’s so many people who just kind of shove themselves through a work environment because they think that’s where they need to be. And it’s hard to be malleable. I could go for a very long time about learning disabilities in the work space. Cause it’s, I think it’s a whole other volume of books separate from this conversation that could be written but are not currently.

Alright. I’m going to the next question. I swear I feel bad for all these questions down here. Thank you for sharing your journeys. Do you feel there’s sufficient resources in college for those with learning differences? So many colleges say they do, but do they?

Rachelle Johnson:
I will say for undergrad, I specifically looked at undergrads based on their disability offices. And that was a major decision for me. A tip for those looking on where to go to college I was told is look where in the university, like the actual physical space the disability office is located. If it is a far off corner of campus, they do not care. If it is a central building that is a large office, it doesn’t mean they care, but it’s a clue. Also also, every college I toured, I asked them to connect me with a disabled, preferably learning disabled student. So they’d send out an email to their little lists and be like, anonymously, oh, is there a student who’d be willing to meet with someone?

And I’d take them to ice cream and I’d be like, so tell me the truth. Will these people fight for me? So I went to a school that was super supportive, luckily. But my grad school experience has been a bit different cause I didn’t choose it based on the disability office. But I am in my own department and my advisor is very supportive. But I’m not getting like, as much support now from the university from the actual disability office that I think I should be.

Natalie Tamburello:
I’m gonna do a small plug here because we are about to publish a whole content piece, a collection about transitioning to college with mental health and learning challenges and the checklist of what to do. And one of the things that Rachelle said is on the list. So yeah, I think a lot of people underestimate the, I’ve heard stories from everything from like, oh, I just go to the disability service office they give me a letter and they email my professors, and that’s all I have to do for the year, for my accommodations, all the way up to, for every exam, every test I have to get a piece of paper signed by the dean of students, signed by the professor, and signed by me within two weeks of the exam and then I have four different classes, which all have co-occurring exams. So not all colleges are made equal in their level of accessibility.

Rachelle Johnson:
And it’s not just the documentation. It’s like, I wanted to know that not only the university center was going to give me easy accommodations, but that if I had an issue with a professor, they were gonna go to bat for me. And I had that, like there were certain times where I had an issue, or I had friends who had issues, I never really had too many issues. And they were like, oh yeah that I told on them to the disability office, and they’re like, boom. Like they met with that professor and they made sure. And this was at a big 10 school, like at a large state university.

Natalie Tamburello:
Next question, in my experience, higher academia and the medical field in particular seems geared towards having neurotypical and able-bodied doctors, professors, other professionals, et cetera, due to how competitive and unaccommodating higher education can be. Do many of you have neurodivergent or disabled peers? I think we kind of, I mean, unfortunately addressed this a little bit in saying that we don’t really hang out with other people like us other than in…

Rachelle Johnson:
I feel like a good majority of my friends are…

Natalie Tamburello:
…LD community settings.

Natalie Tamburello:
Okay, good. That’s good, Rachelle.

Misha Nicholas:
Me too. I have a lot of, sorry. I was gonna say, I have a lot of undiagnosed people that I know.

Stevie Mays:
I’ll also add too, maybe a symptom of our generation, but so many of our, so many of my friends are mentally ill to some degree, so that’s not learning disabilities, but they fall under the umbrella of neurodivergence. But a lot of them don’t quite realize that, or even after I explain why they would, don’t self-identify, but that’s okay. That’s their journey.

Rachelle Johnson:
And as  someone going, like trying to be a professor, there’s a surprisingly high amount of people with like ADHD and autism. Not usually always out, but you’re just like, hmm, like just especially the number of ADHD people. Like I’m in an office of nine people, and I think we counted that like four of us all have ADHD, so like we’re definitely there.

Natalie Tamburello:
Yeah, as, as someone who was pre-med and then didn’t become a doctor. And then I’m also a daughter of lawyers. I think that those two professions definitely neurodivergent people in them, I think the barriers to those are actually the assessments prior. So like the MCAT and the LSAT are extreme barriers. But if you get past those, I think being a doctor and having ADHD is probably a pretty good thing to have. Cause you can stay up late and work really hard and have a lot of things going on. But yeah, I don’t really think about the job so much there. I think about the unnecessary barriers to those professions.

Next question is what, what’s one thing you wish you had that would’ve helped you as a child versus now? I think we kind of talked about this a little bit, but I wonder if there’s anything else, now that we’ve talked for a while that you would add?

Stevie Mays:
I wish, dictation was, more , and I gotta be honest too, and this is my own stubbornness that even through college I didn’t use like text software that would read stuff to me. Frankly, cause it was , what the university could give me, whatever, but I have found, and maybe this is just me getting older as well, even though I’m literally 27, but I find that my memory for oral information has gotten lesser so, and I think it’s cuz my brain has been compensating to read.

Natalie Tamburello:
Yeah, I think that’s a good point. I think I mean, but I’m older than all of you, but I wish assistive technology had been introduced a little earlier in my life and that there was more variety. I felt like everybody was like, oh, everyone used Kurzweil, everyone used this thing. And then like, that was your choice, but there’s a lot of variety within that and ways to use it. And now I think Mac computers can read you and all of that. And then dictation obviously when I was growing up was only Dragon Naturally Speaking. But now, yeah, yeah, it was, that was, I used to, dictate all my papers to my mother who would handwrite them, and then she would dictate them to me to dictate to Dragon Naturally Speaking. So there was like four different levels of writing.

Rachelle Johnson:
Now your Mac can just do it.

Natalie Tamburello:
Now yeah, now it’s so much easier. It’s just funny thinking back to that. So what advice would you have for our listeners as a first step toward advocating for themselves? So say someone’s never advocated for themselves, what would be a good first step?

Rachelle Johnson:
I think it depends on the age. I think that something that was really great that my mother did growing up was she made sure starting in middle elementary school, every single IEP I had had an self-advocacy goal, of how I was going to…

Natalie Tamburello:
Did you attend your IEP meetings?

Rachelle Johnson:
Yes. On, probably starting like sixth grade. Honestly, like overall, my mother did so much right, for, with my learning disabilities, but we had goals of starting middle school. If your child’s younger, I would go with my special education teacher to talk to the teacher, and I would first describe it and then she would help me. And then by high school, I was just telling them and they’d send the email thing, but I think the big thing is just noticing things. Being like, this is wrong or this is right and this is what I need. And starting to talk to people about how you wish the world would change. And just like starting to maybe even complain to other people could start to be advocacy. There’s been times I think I’ve texted Stevie and Misha stuff or friends and like, this thing happened and should I be upset about this? I feel like that was wrong. So starting there off small, of just like starting to realize that you have needs that aren’t being met and then if your child’s younger, seeing if you can add those IEP goals to an IEP. Yeah those IEP goals to an IEP.

Stevie Mays:
I feel like, high school experience, interpersonal conversations, so just with teachers, that usually worked. By the time I got to that point that worked good at the institution, university level. Frankly, sometimes good luck, if it’s like a policy or something I didn’t figure it out. So.

Natalie Tamburello:
Yeah I’m gonna ask one more question out of this list. I’m sorry, to those of you who I didn’t get to your question. But I know we’re 3 minutes away from the end of our time and, but I think this is a good question to an end on. You all come across so strong, independent, and confident, looking back on your experience what do you think was the main contributor that paved the way for you to be the confident individuals that you are now?

Misha Nicholas:
YouTube.

Rachelle Johnson:
What on YouTube?

Misha Nicholas:
Honestly, look, I’m going to.. I know that was a little bit of a jump, but let me explain. So like, what was it? Yeah, the beginning of January, I believe of what 2022? Yeah. I was like, I definitely need to get tested for ADHD or at least ASD, but where do I start? So I looked up YouTube videos first of like, different people’s experiences like, commentators, and I’m like, okay, I definitely need to get checked.

So if you’re someone who’s undiagnosed and like you don’t know where to start, definitely YouTube it for other people’s experiences. I mean, everyone has different experiences, but if you just feel like some of the stories like match up to yours, then yeah, don’t hesitate to…

Natalie Tamburello:
Yeah finding your community.

Misha Nicholas:
That’s how I got tested and Facebook online chat groups like neuroplastic and like, the Autism Spectrum Disorder community. Yes. And TikTok.

Natalie Tamburello:
Yeah. I think it’s hard, there’s some like misinformation out there, obviously, but I feel like community is almost more important than the misinformation. So you, you take it for… with a grain of salt. Anything else? Rachelle, Stevie?

Rachelle Johnson:
I think I just go back to what I said before of, I’m just so glad I knew what I struggled with. I remember I had some lacking social skills as a kid, but I’d get made fun of like a kid. I remember in second grade being like, “oh why can’t you read?” And I’d be like, I have dyslexia. It didn’t occur to me that he was trying to bully me. I just answered the question. I was like I have a disability. I’d be like, are you going to disable… Are you gonna bully me for a disability? And just like, I think that that was the biggest thing for me was just owning who I was and, I don’t know, I’ve always been that way. Like people have always, oh, why is like your spelling so bad. And I just always be like, because I’m dyslexic or someone would laugh. It happens all the time with like new friends, they won’t know and they’ll be like, haha, you misspelled that. And I’ll be like, I have a disability. And they’re like oops. I think that was the biggest thing for me as a child of just knowing who I was and growing more and more as I got older into loving that part of myself, but it was always something I wore on my sleeve.

Misha Nicholas:
Automatic shutdown. Automatically Rachelle. I’m going to use that now.

Rachelle Johnson:
Yeah. I was like, are you gonna bully me? They’d be like, oh, you’re the lowest reading group. And I’d be like yep, observation.

Natalie Tamburello:
How about you, Stevie, since you didn’t even know about your disability for a while?

Stevie Mays:
Nothing felt better in my life than when I started, just like going up to my teachers and being like, look, I’m not rewriting this. I’m gonna edit the expletive. I’m not rewriting this sentence five times because all my peers are doing that for the assignment. It’s not fair if I have to do five times the amount of work, cause I have five times the amount more of errors. I think I said it a little sweeter at the time. But it felt so good and that allowed me, and then I was respected. It was amazing. I think it was like receiving the respect on the basis of my disability. That’s what helped.

Rachelle Johnson:
I was gonna say, in addition to not only knowing what my disability was, but being taught the language at a young age, like I could at 10 tell you all about the ADA and the IDA or IDEA and the 504 Act and how those, like, I could rattle them off and when teachers in high school would not follow my IEP. Oh, you, I would send emails with my linked IEP and a link to the 504 or ADA and a link to IDEA.

So my parents taught me the language legally of what my rights were, and that really pushed, between the disability identity of like learning disability identity, identity, and like knowing my rights like I was gonna end up in advocacy cause my friends would happen. I’d like pull up the like IDEA website. I’d be like, least restrictive environment here you go, this section. So if you can teach your kids like at a developmental appropriate level, like disability law…

Natalie Tamburello:
Yeah. I think knowledge is power. I don’t think it even needs to be around disability law or anything like that, but knowing yourself, the more you know about yourself, the less you’re scared about it because if someone does confront you or make you feel uncomfortable, then you know how to respond cause you know who you are. I think if you keep things away from kids, then they get caught in an uncomfortable situation and they don’t know how to, how to react. So I think that’s really true.

Alright, well I think this is the end of our time. Thank you all Misha and Rachelle, Stevie, and all the awesome questions. We’ve had such great engagement in the chat. I’m seeing normal as just a cycle on the washing machine t-shirt comment, which I’m loving. So it’s just been really great to listen to everybody’s ideas and obviously seeing this in chat. I’m just gonna share some resources at the end here, from CHC and also NCLD. Just in case anyone is interested in it. If you like this podcast episode and you want to hear more episodes like this, you can go sign up for our Virtual Village, which is basically a weekly email where you get all new content from CHC, and any new and upcoming events. Most of these are virtual, so if you’re not in the California area, you can access most of this content.

And then lastly, if you’re able to donate, we really appreciate it because free events are due to generous donors that contribute to CHC. So if you’re able to donate, we would greatly appreciate it. And if you can type embrace in the comment, we’ll then know that this is due to this particular podcast, episode.

I’m going to leave the QR codes up here for a second. But if you also want to just go chconline.org/virtual-village, you can do that too, if that’s easier. And then here are some last resources. So if you’re interested in the podcast, there’s that link. Go to our website backslash podcast.

If you’re interested in SLC. If you’re a high school student, college student, adult with a learning disability and want some support, you can go to chconline.org/slc. and then lastly, if you’re looking for therapy and you’re in a young adult, we also have therapy programs, available if you go to our Clinical Services department and then go to Young Adult Therapy.

And then lastly, NCLD. If you wanna learn more about their programs and their advocacy work and the Young Adult Leadership Council, go to ncld.org. Thank you all for coming.

Cindy Lopez:
Visit us online at podcasts.chconline.org. Make sure to subscribe to Voices of Compassion so you never miss an episode, and we’d love it if you’d leave us a rating and review. Have a question? Send us an email or a voice memo at podcasts@chconline.org. We’re here for you when you need us.