Learning to Self-Advocate

"There's no ceiling to what we can do."

Toby Baker’s educational experience was far from easy. She has self identified as having ADHD and a learning disability, and she frequently moved around to different schools throughout K-12. 

When it came time to go to college, her teachers and advisors tried to dissuade her, but she went anyway.  Now she talks to us about her dissertation about the perception and success of post-secondary students with LD, and the importance of self advocating to get the resources you need to succeed.  

For more resources from LDA America, visit ldaamerica.org

Transcript

Lauren  00:12

Welcome to the LDA podcast, a series dedicated to improving the lives and education of all learners. Today, we get the chance to talk to Toby Baker, the winner of the 2020 Harrison Sylvester award to talk about her experience in higher education with a learning disability and the importance of self advocating.

Kristina Scott  00:34

So hello, everyone, I am here with Toby Baker, the winner of the 2020 Harrison Sylvester Award. This award honors and recognizes an adult with a learning disability who has shown a strong dedication and commitment to advancing the issues of adults with learning disabilities. Miss Baker has self identified as having a learning disability and ADHD herself. She has been a teacher of students with LD for the past 10 years, and as a researcher and PhD student scholar, her dissertation topic is focused on the perception and success of post secondary students with LD and higher education faculty. Thank you for joining us, Toby.

Toby Baker  01:09

Thank you very much for having me. Thank you.

Kristina Scott  01:12

So you identified yourself as having a learning disability and ADHD, what has been your own schooling experience been like?

Toby Baker  01:20

Well, it's funny because I actually just started self disclosing a couple of years ago as an adult. But as a student, I never told anybody except for professors, K through 12, I went to six different schools, I transferred...my parents transferred me a lot, because I guess the teachers didn't think I could learn or that I wasn't smart enough, or that I wouldn't be able to reach my full capacity, they were very clever about how they pitch things to us, and, and even up till 12th grade, I knew I was gonna go to college, but a lot of people, the teachers and advisors said not to even apply to college. And I said, No, I'm going to college. So I applied to, you know, four year colleges, and I graduated on time in four years, with a 3.9 GPA. So, you know, I was able to do that. And one of the things that I looked at in my research is that if students with disabilities are unable to finish undergraduate work, how are they going to get to masters and doctoral work, and so forth. But as a K through 12, student moving through schools, I was always very strong in English and linguistics. And then, but math, I was not very good. So I went to different schools, and I just found by senior year that I had to self advocate, advocating had become a very big thing for me. And then when I went to college, I realized, you know, I have to keep doing that. And I would get into professor's faces a little bit. And then I was very outgoing and outspoken. And I refuse to accept no, and I just kind of let everybody who was negative, like, I just didn't listen to any of them. And I just did what I had to do.

Kristina Scott  03:22

So what made you pursue teaching?

Toby Baker  03:26

Well, I think after you know, I majored in theater and then I majored in English, and I needed a teaching job. And I wanted to be an English teacher because I love writing so much, but the need was for education, special education. I said, Well, I can teach that. And so now I love it. I'll never go back to Gen Ed, I've never taught Gen Ed, I've always taught special ed. And what I found is that the students were just like me. So if they struggled with something I kind of, you know, I think that almost makes me a better teacher, because I understand exactly what they're going through. Or if they've switched schools a lot, or if they've had different teachers, I think it's just very important that, you know, you like everybody. A student knows if you don't like them, if the teacher doesn't like them. So I think that's one of the things is making a connection with the students and knowing your students as a teacher, that's the most important thing for me, because I remember when I knew when teachers didn't want me in their classrooms, so you know, I was the burden and I felt bad about that. So as a teacher, I kind of transfer that, like, how would I feel, like I've been there. So it kind of makes it a deeper, more meaningful connection with the students.

Kristina Scott  04:43

It sounds like you have a lot of empathy because you've been through it yourself when a lot of teachers, they can empathize, but they can't actually be in that other person's shoes.

Toby Baker  04:52

So in that sense, I've worn a lot of hats or you know, I can kind of code switch back and forth between 'Am I the teacher? Am I the student? Am I the adult? What am I at this time?' and especially at this conference, it's very nice because I can self-disclose so easily. Where, you know, out in the real world, I haven't told anybody at all, but you know, I kind of do it every now and then when there's somebody who needs me, but I feel that students if they're in, you know...as a teacher, it's very important for teachers to know their students, and to know that they're going to grow up and go to college and kind of seeing that almost like a self fulfilling prophecy. If they say they can't do it, then they're not going to do it. And the student needs to know that and just being really positive around the students and encouraging them to be college bound rather than, well, they can't go to college. So what are they going to do instead? Because I've had that, and I don't advocate that at all. I think students should be able to do whatever they want. 

Kristina Scott  05:57

So really no ceiling for them, they get to decide. 

05:59

No, there's no ceiling. And only they can decide that, they're the only person who can tell you what to do in your life is you. 

Kristina Scott  06:06

So you've been in the field teaching for 10 years, and you've decided to go back and do more schooling for a dissertation. 

Toby Baker  06:12

Actually, I'm at the end. I'm actually writing my dissertation. I've been at school for three years with a leadership program at Pepperdine University and I have learned so much, I've changed so much. Because when I first started, I couldn't even tell anybody there that I had a disability. And I know that there's tons of students who go to college and don't self disclose. I have actually become a stronger advocate of self-disclosing, because how are you going to get the accommodations that you need in college if you don't tell anybody? So, you know, you can't do everything yourself. I'm a big believer in you need other people. I have like a whole team. In my mind, I have this professor here, and this professor there, and this mentor here, they've all contributed to who I've become. And so at Pepperdine, and I find this in my research, too, and I'm looking and I'm like 'that happened to me, that happened to me in this area,' so I can see it, that it all comes together. So even when I'm code switching and wearing different hats and so forth, they all kind of overlap and connect very nicely, which is very, very interesting to me.

Kristina Scott  07:21

So you're very open about disclosing now at university, where I know the research says 76% of those with disabilities don't disclose. And you actually are kind of looking at this with your dissertation topic. 

Toby Baker  07:34

I feel sad that that's so many. I think because I wasn't always open about it, I think there's a perception that not only that the outside world or the non-disabled people may look at students with disabilities and say all kinds of just not nice things about them. But I think, as the student, you're saying, you have to know, well, I'm not going to succeed if I don't have a, b, c, and d, I have to get this, I have to get that, I have to do this. When I was going back to school to start at Pepperdine, I actually thought about being a special education lawyer. And so I had to take the LSAT. Well, I had to get accommodations to take the LSAT. So I had to backtrack a step and get another evaluation at age 40. And that was interesting to me, because it took me weeks to find somebody who would actually evaluate me because nobody would evaluate me. I was looking all over the country, I was gonna fly anywhere, for anyone who would evaluate me. And I thought if other people have to go through what I've gone through, this is terrible. So I really want to, as part of my work, I do the research, but I also want to make it easier for students. And if we don't know that they're out there, that goes back to your 76%, if we don't know they're out there, how can we help them? 

Toby Baker  08:38

So yeah, really empowering students to advocate for themselves because it's them that feels not having an accommodation affects them.

Toby Baker  09:03

But that might be part of their disability. So we can't expect...I'm extremely outgoing, in your face, I'm just like mean as a dog sometimes I'm like, I'm gonna get what I need. But not everybody's like me. And so, you know, there were times when I was in undergrad, I went to Moravian College in Pennsylvania for two years. And I would sit in office hours and I'm like, I'm not leaving until I get what I need, and you're gonna .....and the thing that I found most in my research, is professors absolutely hate extra time because they themselves don't want to have to spend the time. And I'm like, well, the students also have to give up those two hours that they can't go out with their friends for pizza because they have to sit in your office and finish a test, and they have to be there too. So it is what it is. It's kind of like you know, when I write an IEP, I tell other teachers it is what it is, you have to do it, something has to be done. So how badly do you want to pass the test or get the degree, that is what should be the motivation, you'll give up going and sitting with your friends and having pizza, if you know this is my degree, this is the reason I'm in college. And so knowing that, you know, that's the kind of thing that drives you to get up at seven o'clock in the morning, to go to a tutoring session, or go to the writing center, when you'd rather be doing whatever activities you'd rather be doing. If you know that, at least for me, I knew that I had to do this step, this step, this step. I have an ongoing, right now, writing center appointment every Thursday, even now as a PhD student with my papers, because I know I need that. And I'm not going to wait until April to go to the writing center. I go every single week along the way with all of my awful papers. And they keep getting better towards the end. But I don't wait till the last second to do it. And that's the thing about the students, the ones you're talking about, the 76%, they need to come out right away. I've heard from my professor friend, their students will slide accommodations under the door of their room, their office, the day before the test, and I'm like that poor professor has probably never known for the past two, three months that that student had a disability and they could have helped them. Yep. So

Kristina Scott  11:31

So being proactive it sounds like, 

Toby Baker  11:33

Oh yes.  

Kristina Scott  11:35

And self empowering, and advocating...

Toby Baker  11:37

And there are laws like FERPA, the parents can't do anything, I mean you can kind of be a helicopter parent, but not really, because FERPA protects the students. That's another thing is the students don't read their IEPs and they don't read their accommodations. So when they get to college, they have no idea what services they actually get. So even if they go up to the professor and say, I have a learning disability, and then the professor says, Okay, what do you want me to do for you? And they say, I don't know. Okay, you know, they have no idea. And so I'm thinking, well, you know, what did you have back in high school? Or did you look at anything? Did you have any meetings for transition, anything? And half the time, they just have completely forgotten. And so they need to be prepared and be ready and get there early and really figure out a plan. And that's the hardest thing for students, especially new students.

Kristina Scott  12:07

So what have you been finding in your dissertation research? You mentioned one highlight about faculty reluctantly giving up time, and students also having to give up that same time. But what are you finding?

Toby Baker  12:42

Oh, all kinds of things. In my actual dissertation research, I'm studying, I've done tons of research on students...post secondary students with disabilities. And advocacy was always a big thing. But I found while I was doing policy work, last year, I had the opportunity to take some of my policy work to the White House to the director of political affairs, and presented the policy paper, policy brief, and so forth. One of the things that I noticed, you know, there's this factor, there's 20 different factors of what leads to departure or dropping out. And what I found is that there was one little thing on the sidebar, about the relationship with the faculty, and I thought, I'm gonna dig into that. And then when I looked at faculty, there's so much about faculty interaction with students. And so I started wondering...it's like, the whole thing should be the student, and I'm like, I don't think so I think the faculty have a lot to do with it. And so the more that I've found in my research, is that there's this perception, a lot of just really hard things to look at, in the sense that, you know, we think faculty are going to be all like, 'go team,' and 'way to go' and, you know, cheering us on, but really, many, and I don't have an exact number on the top of my head right now, but there's many faculty that have just down right stated that they don't want students with disabilities in their classrooms. The reason for that, in their post secondary classrooms, is because they themselves don't have enough training. The lack of training, they have it K through 12. Most school districts, all over the country, have training programs, even if it's just a little wimpy three hour module for every teacher to sort of to cover themselves and to protect themselves legally. In higher ed, there's maybe a little bit or none. And so you can get adjunct professors and a visiting professor and even full time faculty who have zero training, have never even heard of IDEA, let alone read the document, or the ADA, any of the disability laws, the legislation, none of it. So they have no idea that they even have to accommodate, and the university doesn't always tell them. So they just, you know, go into the classroom and they go in as the expert, and they have no idea how to reach all of the students, and they may not even know that they have students with disabilities in their classroom unless they've received the actual accommodation letter. But even last year, I had a professor, love them to death, nicest guy, I went up to him because I'm aggressive and I'd kind of get my needs, and I went right up to him, I said, I have a learning disability. Have you checked your disability activism letter from the accessibility, every semester, I have a letter sent for the accessibility to every professor that I have. And he says, Oh, I have 80 emails and I haven't even checked my email. And I'm thinking, well, then I'm going to tell you exactly what I need. But not every student does that. And not every professor checks their mail or text, opens their letters, or, you know, the student may say, Okay, I sent that and I'm covered, I'm good. You're never 100% until you get exactly what you need.

Kristina Scott  16:16

Great. So you're finding, there's a lack of training really in higher ed. 

Toby Baker  16:20

There's a lack of training, a lack of knowledge, just even just in general, I think because, and this is speculation, I'm sure I'll find data, but I'm looking at the differences in age group. Younger professors are actually more in tune with how to serve and provide accommodations to students with disabilities, where the older professors started teaching long before No Child Left Behind, and 2004, and IDEA, before all these and 2008, Higher Education Opportunity Act. All these laws came like 30 years after they've been teaching, and you know, they may not even know they exist. And so for them to change the way, I mean, my goal as a researcher, the end of my document will be that there's something that's going to change. Is that the way the professors...maybe there's more education, maybe there's more awareness, or maybe just more understanding of what the student is going through. And, you know, when I was an undergraduate, I didn't take notes very well. So I had a girl next to me, she Xeroxed, back when we had Xerox, Xeroxed everything on her whole notebook for me out of the kindness of her heart, but really, I had to sort of elbow my way in and ask for that accommodation from her I should have already been provided, I should have already had that, I shouldn't have had to beg my friend to do that for me. But I knew how to kind of wiggle, wiggle and get what I needed. Where some students are like, Oh, I just don't take good notes. I'm just not gonna even think of it, you know. And then when they fail a test, they say, Well, I didn't take good notes. I didn't take any notes. So I wasn't like that, I was very, you know, I was very active on getting exactly what I needed. But not everybody's like that.

Kristina Scott  17:50

Sounds like you have been super aggressive and it led to a very successful life. And the award that you recently received, 

18:17

I'm so honored. And I have to tell you, when I found out that I won I jumped up and down next to my car, I couldn't believe it. But really, I just want to serve the students so they don't have to go through what I went through. And I want them to have an easier time and know that they can do everything. They can do anything they want, and not to let anybody tell them what they can and can't do. And I haven't let anybody, I mean, there's so many people who have told me you can't do this, you can't do it. I'm like, I'm not gonna listen to you. So I decide what I will do. And you're right, there is no ceiling to what we can do. And you know, this could be the students that we think are the ones that might not make it, they're the ones who probably will go invent something and move on and become geniuses and you know, win awards and so forth.

Kristina Scott  19:02

Just like you just did. A proof of success. 

Toby Baker  19:05

Thank you. 

Kristina Scott  19:06

Thank you for your time, Toby, I really appreciated the conversation. 

Toby Baker  19:10

Thank you for having me very much. Thank you.

Lauren  19:20

Thank you for listening to the LDA podcast. This series has been made possible by The Learning Disabilities Foundation of America. Our theme music is little idea by Scott Holmes. Next week, we'll talk to literacy consultant Katy Garner on advice on how to trick the brain into reading and writing. For more resources from lda, visit ldaamerica.org