Episode 14: The Importance of Self Advocacy

On this episode of the Inclusion Think Tank Podcast, I welcome my guest Steven Palivoda. We discuss the importance of self advocacy as it relates to inclusive education.

Episode Transcript

Arthur: Welcome to the Inclusion Think Tank Podcast presented by New Jersey Coalition for Inclusive Education, NJCIE. As the name suggests, this podcast will discuss inclusive education and most importantly, why it works.

Arthur: On this episode, I welcome my guest, Steven Palivoda. Steven is a photographer and self-advocate. He currently is employed as an administrative assistant for a nonprofit organization that works with individuals who have disabilities.  During our conversation, we share the importance of self-advocacy as it relates to inclusive education.

Arthur: Welcome back to another episode of the Inclusion Think Tank podcast brought to you by the Jersey Coalition for Inclusive Education. I am your host, Arthur Aston, and I am happy to welcome my guest on today's episode. Steven Palivoda. Steven, welcome to the podcast. I'm so glad that you are joining us today. 

Steven: Thank you for having me. It’s a pleasure. 

Arthur Yeah. So you and I, we met a few months ago during the virtual Dare to Dream conference. And I was in I was kind of overseeing and facilitating your Zoom room where you hosted your conference topics.

So, and the Dare to Dream conference. I found it, It was my first time attending the conference and I found it to be very just a great experience. And you got a lot of comments and then reading all the comments when you're doing your presentation and everybody really enjoyed what your topic was.

So I'm really happy to be with you again virtually, and to have you back on the or to have you as a guest on the podcast. 

Steven: Happy to be here. Happy to be here for sure. 

Arthur: So if you could, can you share with us a little bit about yourself, who you are, and share with us what your disability is. 

Steven: Sure. So my background, I've changed jobs a lot over the years. I've been in teaching, long-term substitute, I was a paraprofessional, which, for those who don't know, is a teacher's aide, where you shadow a student and you follow them around, helping them with their assignments if need be.

I've also worked in different office settings now, and currently, I am an administrative assistant for a nonprofit organization that actually works with people who have disabilities. And it's really fascinating. So it's quite, I don't unfortunately, I don't really work with them.

I work with the managers and I work with my director and everyone else around me. So it's definitely a learning experience for sure. Every job you have has its perks, ups and downs. As for and photography really is my passion and what drives me to keep going art is where my foundation is.

So on gorgeous days like this, when it's not howling winds, I’m usually outside taking pictures if I'm not working and whatnot. So that being said, that's kind of how I use my time, like when I have downtime. 

Steven: My disability, so it's classified as just typical specific learning disability. Mine specifically was in reading comprehension, I think with other issues I can't recall, but reading comprehension was definitely my weakest one. And I remember I could literally read a chapter in a book, and then get quizzed on it, and I would fail a reading quiz because I knew I couldn't remember anything. So I had to work on different strategies on how to actually go about doing that. So that disability, I feel like now I’ve outgrown it more or less, at least in the academic side of it.

I do believe there's a social aspect to my disability that was never really talked about because, being when you're a lot more mature than most people your age, there's that separation that you have and you feel more alienated.

So there is a social aspect. I always say lately there's two aspects of disability. There's the academic side, but then you also have the social aspect to it. And a lot of people I think just kind of brush off to the side having I think that's always worth looking into.

That's a disability for me. It doesn't really, I always tell people never defines me. It's part of who I am because it never should define you. 

Arthur: That is so great. I love that you brought up your photography because I remember you mentioned that, and then you invited everybody to follow you on social media.

Steven: And I had some following. Not a lot of lot, but I’m thankful. 

Arthur: Yeah. Yeah. And I followed you during that time. Yeah. I always say, I wish that I had some kind of, artistic talent, like drawing or, having an eye for photography and things like that.

I love, like you mentioned, I love being outside as well. I was actually outside today and it was quite windy outside, but I loved being outside in nature and living in Jersey, you get to go to the beach and things like that and then look outside.

Yeah. And then there's, the nature of the forest being out in the, what, Pine Barrens and things like that. So there's a lot of things to see and photograph. So that's really cool that you do that.

And I also like that you mentioned the social part of disability. And that's really it was very important to mention that. So thanks for sharing that with everyone. 

Arthur: So as I mentioned, you and I, we did meet during the Dare to Dream conference sometime last year.

We were discussing this before we started recording and we think it was in October, but it's hard to remember what day or month it is now. So, but the Dare to Dream student leadership conferences are a conference that highlights the importance of student self-advocacy and leadership.

And as I mentioned, you hosted a presentation and one of those presentations was titled ‘Rooted in Inspiration’, where you shared things about why it's important to be inspired and what inspires you, and how that pushes you forward and led you to where you are today.

Can you give us two things or two people that inspire you and why? 

Steven: So I think this is a no-brainer. I think that photography is definitely my biggest inspiration. It's like it's my favorite. It literally gets me going every day.

The fact that I know at any point when I'm not working and I can go out and take photos when that's not when the weather is really good and comfortable, it's wonderful. Like I've been able to see so many different places, even ones that I think like in the past two years I've taken almost 22,000 pictures, which is pretty monumental. 

Most people don't even get that in a lifetime. So and I've accomplished that in about two years. Well, It’s pretty incredible when you have that kind of passion and nothing will stop you. To get an idea of how passionate I am, I once did a trip from New Hope, Pennsylvania, all the way to Hoboken in one day, and I went and stopped for lunch in between. I was pretty exhausted, but that was one of the best trips I ever did because I got probably about 300 pictures that day and I was very exhausted when I got home, but it was the best kind of exhaustion I could have asked for. It's a type you want to have. I'll put it that way because, you feel accomplished, you feel good, and you're tired from something you enjoyed doing.

You're not tired because you are stressed. If anything, it's a good kind of stress because you've been working a different part of your mind in life. That's the creative side of me. So I'm definitely photography is like my biggest thing.

Steven: I’ve been doing this really passionately since I was nine, but like professionally since I was past like maybe three years. And I have had clients for photoshoots too, you know. So it's been a lot of fun in that respect.

That's one thing I'm trying to think. The other thing that inspires me, the main thing that is people, I'd say more people in terms of my friends, they're definitely like also a huge core of who I am because really if I'm having a bad day, I know who my go-to people are. I know who I can pretty much always hang out with like every week if I want, or like if people reach out to me to want to hang out and do things and it's all about going the extra mile for people, and it's all about like everyone else reciprocating, because otherwise, friendship is like a two-way street. You can't just have one person pulling all the weight if it's only one person, we don't call that a friendship. It's just a one-way street. And it goes nowhere. It just passes right by you.

So it needs to be a nice flow. You have that fluidity going on there. So I’d say between photography and friendship, like those two go hand in hand for me. 

Steven: I will say sometimes friends don't always care for when art because I stop at every little thing and I take pictures of, so I always tell people, if I bring my camera before water, you're actually going to stop a lot along the way. So if that's not your thing, don't tag along. 

Steven: So I just I try to keep a good balance, you know, like that's where my inspiration comes from, either from the world of art.

And even though photography is my core, architecture definitely plays into that too.

Arthur:  I love everything that you said with the friends. I can definitely relate to that. I always say my friends inspire me. So I really love that.

And just that you found such passion in photography, and I definitely believe that things like that, with art and photography, writing, or singing or writing music or playing music, I think it can all be very healing and therapeutic for you.

Steven: I was just going to say therapeutic. Yeah, that's a huge part of it because you get to see so much of it. It's like you feel free, you know, it's a sense of freedom. Like you're breaking away from everything in the world and you're able to do what you like.

Arthur: So, part of your presentation during the conference, we talked about a lot of different things and people asked a lot of questions, and one of the things I wanted you to touch on during this conversation is what advice can you offer for those in high school who are preparing either to go to college or into the workforce? 

Arthur: What advice can you offer them on how they can be their own self-advocates and proactive to assure that they receive the services that they're entitled to having? 

Steven: Sure. This is a big topic for me. Being your own advocate, that is advice itself.

Really just being able to push yourself. I think I said this in the conference too, and I've said it in years past. No one can want something more than you do. You have to really want that. If you don't want it, no one's going to tell you, oh, let me help you.

If you're waiting for that silver spoon, chances are you might be probably already missed out days before. There's no sense in waiting for it. You just gotta go for it.No one's going to tell you, get on that train. You're going to have to do it, you know? 

Steven: So, and you got to utilize your resources even if you're in high school. I get it. You have your IEP team now and that's great, but you have that power to still take charge of what classes you can take. You should never let a counselor tell you, Oh well,

you haven't taken any advanced classes, so you're probably not ready for that.

Like I had that happen with a guidance counselor where of course, I respect,

who will remain nameless, but she was convinced that because all I ever had was in-class support for English, she was convinced that I could never do well in an accelerated English class, which was not true, but unfortunately my hands were tied.

I tried to fight as hard as I could, but at the most, they would let me deal with being in a regular class without any in-class support, which I thought was really unfair. So my advice is really just to try to fight for what you want.

Steven: Because, at the end of the day, you will not have a second teacher with you when you're working. Yes, you have are resources at your job, that you can always reach out to, you know, like if you're having a rough day or if you have health benefits, for instance, you can utilize therapy. Yes, it's going to cost you money, but it's going to be at a much lower rate compared to having to pay out of pocket if you weren't part of that particular workforce.

That's what I do. So because of who I work for, I have therapy at a discounted, at much higher discounted rate. You know, you're talking like paying 40 bucks as an example every time versus 120.

Huge difference, right? So you want to be able to like find ways to utilize those resources, know where you need to go for help even in high school. Utilize your teachers all the time. That's what I did. If anything I stayed school when I got stuck and couldn't figure out a thing, I didn't have much of a social life in high school. That's just where how I chose to be. I didn't feel like I ever really fit in. So for me, utilizing my teachers was really my only outlet. So for me, that was the biggest help I could have asked for.

Steven: If college is your thing. Here's this advice. When it comes to college, you want to find out if your college or university has a specific program for people with disabilities. Right. Some universities will have it where it's much more generic and they just have disability services.

Middlesex County College, unfortunately, it's no longer. But the college used to have a program called Project Connections, which was a fantastic program. It was known nationally at one point for being one of the better programs in the country.

And it was very selective, only about maybe like 100, 120 students got in every year, but it was a very focused program where you could actually go through these different classes and they would basically give you like that helping hand that you need to succeed.

They basically gave you the tools that you needed. I'm sure there are programs that are still out there, even though it's not called that particular name. There are programs that exist and you have to figure out if they are out there.

Steven: Disability services is wonderful, but remember that's more generic and chances are if you're not going to speak up, you might never get the accommodations you need. And if you do need them, you need to be the one, and no one can tell you when to do it, if ever you have to have the courage and build it up to what the professor pretty much in that first week or first day and say, hey, like and wait till after the class is over and say, hey, this is who I am, I'm your class, And then just say, like, if you're comfortable what disability you have or at the very least say I'm with disability services, I have these accommodations, how can you help me? How can you help me be more successful?

You have to ask that question. No one's going to ask that for you because the professor is there to teach. Not that they don't care, but if you don't bring it to their attention, they're not going to look for it.

It's not like the teachers in high school where they're trained to look for that because they already know what the IEP is ahead of time before they even have you. Professors don't have that. They don’t. You have like a more like individualized plan in college for sure.

But the American Disabilities Act, you get covered under. But again, the more generic. So you have to be your own advocate and knowing where to go, who to talk to, you know, utilize your professors' office hours. There is like I was in some professors' office hours multiple times in a week, just even just to get papers, looked at, because I knew that would help me get the higher grade because, that's the secret. If you know the teaching style of how that professor teaches and you will that style find professors like that and they happen to be in your major stick with that particular professor for every class or as many as you can.

I did that at Kean, and one in three professors there was fantastic. So much so I don't know how I pulled this off, I had them five times in two years and yeah, it was intense. But I loved his style so much because his style matched my learning abilities.

That's what you need to know too,  how you learn and know, like what your strengths are, but also know what your limitations are. Your limitations shouldn’t be defining you, It shouldn't be like hurting you, academically. But you need to know how far I like to go so that you're not going to be putting yourself in a situation where you're going to be stressed out. 

Steven: You know, that's what the accommodations are for, like extended time, wherever you take a test, maybe typing it out if you know, you've got terrible handwriting and you don't want your professor trying to struggle to read what you write.

So things like that. They call out books on tape, a digital reader nowadays or like you have it like on the flash drive and you can also hear the recordings back.

It's just a matter of utilizing your resources, knowing who to go to, and when, because that's really what got me where I needed to. They even have counseling services for free at colleges and universities. A lot of people don't utilize those resources.

And the best part is they don't tell you this really too often, but the secret is, for the most part at least, that Middlesex County College isn't the case, I'm certain isn't true for all places.

Steven: Even after you graduate, you can pretty much go back whenever you want, like you can go back as an alumni and it will never be a problem. I've done it a few times. It's nice, you know, because it shows that you have a deeper connection with what you were there for. 

But the reality is you have to be willing to accept them, what your limitations are, but knowing how to work those. Even when I had a reading lab, which is probably where I tackled my disability the hardest for reading comprehension, I went to reading lab sessions after the classes were over many times until I got it drilled into

my head on how to read better and because I used to hate reading as a kid. For the longest time and it took me over a year to read a book. Now I can literally read a book and know how to read better as well.

I can actually enjoy it and actually remember it more. So like the skills do work. You just have to be able to apply yourself to knowing what your resources are, knowing the knowledge, but also know apply yourself. knowledge doesn't help.

Knowledge is to me, there’s that old saying where people say knowledge is power. I don't think so because it’s also how you apply yourself and what you do with that knowledge. If you're just given that knowledge and that's great, but what are you going to do with it?

Arthur: I love so much of what you said, and I think it's really important that self-advocacy is just so important. As you said, nobody will want it more than you or should want it more than you.

And you have to it's important to speak up for yourself and also to be aware of the resources that do exist, like the student disability services, on college campuses. They have programs like that on most, if not all college campuses, and they are there to help. And you know, as you said, you can't expect the professor to know every single thing about every student. So you have to go to them and like you said, utilize their office hours and spend time talking to them and let them know what your strengths are, what your limitations are.

I think that's so important to mention the limitations and how you both can work together to make sure that you are successful because they do the professors they do want to help. And at the same time, you as your own self-advocate have to let them know how they can help and what is most helpful, because they won't know unless you share it with them.

Arthur: I appreciate you everything that you've said during this conversation. And, I'm very excited again and happy that you have joined me for this episode and shared your perspective and your experience of things that inspire you and how you were able to be your own self-advocate through your academic career. And, and it has led you to doing great things in your life. So, Steven, I appreciate you for taking the time out this evening to join me.

Steven: Anytime. My pleasure. 

Arthur: Yeah. So I appreciate you doing this for me. So thank you. And I will be in touch with you soon.

Steven: Sounds Good. Thanks so much for having me.

Arthur: Thank you for listening to this episode of the Inclusion Think Tank podcast. This podcast is brought to you by New Jersey Coalition for Inclusive Education. Don't forget to subscribe to the podcast on YouTube or Spotify and to follow us on social media @NJCIE. Until next time.