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Growing Leaders in Self-Advocacy

January 12, 2022

When it comes to creating a  self-advocacy curriculum, teamwork really does make the dream work. It takes a deep and patient understanding of the history and culture of the many walks of life. Jairo Arana joins the AUCD Network Narratives podcast today to share his advice on how we can improve self-advocacy curriculums within our programs.

Jairo’s journey in self-advocacy began after being diagnosed late in life with autism and taking a three-day intensive pipeline leadership training program. This sparked his self-advocacy journey which eventually led him to become the full-time clinical program coordinator at the Mailman Center for Child Development.

In this episode, Jairo shares his personal story of self-advocacy, leadership, and impact. He opens up about his creative passion for telling stories and the arts. He talks about the importance of seeing diversity and inclusion in his favorite shows and how this has impacted the stories he wants to tell. Jairo takes you behind the scenes of his leadership program and how finding his mentor impacted his work and self-advocacy journey.

Listen to Jairo’s story as he shares important stories about self-advocacy, his journey through his late diagnosis, what he would tell his younger self today, and why learning the history, understanding the culture, and teamwork is the way to a more empathetic and inclusive future.

View all episodes and transcripts at http://www.aucd.org/podcast

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This episode was funded partially by the Administration for Community Living through technical assistance contract # HHSP233201600066C. The contents do not necessarily reflect the views or policies of the Administration on Community Living, US Department of Health and Human Services, or the US Government.

This podcast episode is provided in partial fulfillment of tasks outlined in a cooperative agreement (#UA5MC11068) between AUCD and the Maternal and Child Health Bureau (MCHB). The contents do not necessarily reflect the views or policies of MCHB, the Health Resources Services Administration, U.S. Department of Health and Human Services, or the U.S. Government.


Welcome to AUCD Network Narratives, where we share real stories from our members. I'm your host, Jeiri Flores Advocacy Specialist at the Strong Center for Developmental Disabilities and the co-chair for the Council on Leadership and Advocacy. Join us as we hear from inspiring leaders within our network working to make a change.

Jeiri Flores: So I'd like to introduce our guests here today. Hi, Jairo Arana his journey in self-advocacy began after being diagnosed late in life with autism and taking a three-day intensive pipeline leadership training program. That's that led him to becoming more involved in self-advocacy and participating LEND. He started out as a part-time consultant at the mailman center for child development and was hired full-time in 2017 as a clinical program coordinator. He now assist in his LEND and use this pipeline leadership program. So outside of self-advocacy, who are you?

Jairo Arana: Besides my advocacy I like to write, I like to draw. I kind of like, I love the arts, big on science fiction and fantasy. I like to read books. I love history. Before I got into self-advocacy, I was like, you know, and to film, I still am, but that's how it all began for me. It was like, oh, I might be a filmmaker. It's like on a writer. I don't know which one, and even to comic books, but now I'm like doing some writing again and on the side, I focus 100% on my job on my nine to five, but whenever I get the chance to write or draw, I do that.

Jeiri Flores: What are the stories that you kind of want to tell?

Jairo Arana: The stories that I want to write, we’re all really not didn't say anything. They're all mindless and just, oh, I’ll just have an action movie. I love action movies, but then I discovered science fiction and fantasy can actually talk about social situations. And recently I’ve noticed that the things that I’ve been getting into writing on the side, I end up applying much of what I’ve learned through LEND. And it's like, wait a minute, It's kind of like, I like the word bleeding into, but yeah, blending into it's like, oh my gosh, this is such a valuable lesson. Well, you know, we can tell a story where it's like, you learn stuff you're inspired, what to do and what not to do. And when it comes to leadership, for example, in my photo of me that I sent, I'm wearing a t-shirt on one of my favorite shows, which I binged watch at the beginning of the pandemic. I'm like, Hey, I learned that in LEND. Oh my gosh, I learned that in LEND to diversity, inclusion, equity, teamwork, assertiveness, not being emotional, too emotional, all these things where I was like, oh my gosh, this was already out there. And it's, I'm being reminded like after binge-watching on like one of my streaming services, I'm like, yeah, this is good. What are you doing in difficult situations? How do you problem solve? I started to think, you know what, I like to just tell stories about people and show people's perspective and not just show my own perspective, but show the perspective of others. Well, you have to be very careful. It's like, wait a minute, I'm not, you don't want to co-op other people's narratives. You want to be like, inclusive, would be diverse as like, look this particular individual and this other particular individual experiences life differently. I think that you can include diversity in your stories. And something that I’ve been doing quite consciously is actually having characters who have disabilities, whether it's physical, whether it's invisible like autism, which I know what it's like to be autistic, but I'm like, that's a very interesting story because I don't see myself as like, my mind is fine. And it's like, it's like, no, you're autistic. Like, wait, what? And then I start to think about like include characters that are a diverse, don't just focus on your own narrative, have people and have them talk and dialogue and think, make mistakes, and learn from their mistakes. And I’ve certainly made a few mistakes in my journey in leadership.

Jeiri Flores: That's a little bit more about that journey. I mean, you say you see it everywhere. So tell us what it was like to be one of the first that, you know, what was it like as you grew within your position?

Jairo Arana: When I did salt, which now, part of our LEND program, because before it was funded by the DD council here in Florida, I think I was a little self-absorbed and thought, I mean, I had just been diagnosed and I had been diagnosed like two years before I was still struggling with it. And one of the things when I did the leadership program was that on day two, I started to see the world beyond my perspective. I have to give a big shout out to Shelly Bear. She's my mentor. She's the person who advocated for me being hired. I was very quiet during those three days, I was listening and I'd be like every now and then I say something or respond to participate. I was quiet and listen when I needed to listen, I spoke up when you know, to participate when I felt like speaking up.

Jeiri Flores: What does that mean to you, your mentor, and how has that impacted you?

Jairo Arana: One of the things that kind of made me connect with my mentors, she created the bold beauty project, which is women with disabilities, working with a photographer to do a photo shoot, artistic photos was like, you know, the beauty and empowerment of women with disabilities. And I was like, wait a minute, whoa, I love photography. I took photography. And I went to film school. I love the art. So like I mentioned earlier, I was like, I love the arts. And so I was like, can I volunteer in any way? Help? Just tell me what to do. I'll make the coffee. I'll be like help park cars. And I kind of like helped. I helped out with the exhibit and there was an exhibit and I got two friends of mine also with disabilities to help us out. And it went great, but I was like that connection and with our love for the arts, but also for justice, social justice, you know, disability rights and what she taught me as a mentor, it's something that I try to apply to our led self-advocates and something that I’ve talked about when I meet with other self-advocates. And I say, we need the mentorship approach. We've got to have that One-On-One. I've also learned that everyone has different learning styles. And one of the things about the pandemic that has made things very difficult for all of us is like, some people don't want to sit through zoom. Some people are not that great with computers. And it's like, this learning curve. Now I have to learn to be good at this. Whereas before the pandemic, we have a great self-advocate who went through the whole pipeline. He did the high school program that went on to do, salt and then went on to become a LEND trainee. And he finished LEND. But, you know, he was a very one-on-one, I'd be like, okay, come over here, sit next to me, that sit next to me and you know, and shadow me and just, and ask any questions and that approach I helped him with his advocacy project. Because we have in our LEND program where, you know, part of the program is like, okay, you got to create, come up with a self-advocacy project. You'd make the PowerPoint. You know, this is a problem that we want to solve. Like for example, transportation, how can we solve the issue of transportation in our state, for example, on a systems level change, things like that. And you don't have to implement it. It's just think about it. And so that one-on-one is kind of the approach that we do. So what Shelly role modeled, leadership role model on to me, I do with our self-advocates, but sometimes it can be a bit challenging. I know I’ve been a bit challenging to Shelly.

Jeiri Flores: I think that as you've grown as an advocate, and I think you've kind of made mention to this, that as you've grown as an advocate, things have changed for you. And even the way you look at the world is a little different. But if you had a moment where you could go back to your younger self, what would you say to your younger self?

Jairo Arana: I have no idea. I'd be like, who is this person wearing a t-shirt, how old are you? You are wearing a Frankenstein t-shirt or whatever. It's like, you're telling me to be patient, be patient. No, I don't want to be patient. Life is now. Cause I was very impatient. And that also added to anxiety, depression. I felt like I was always trying to like, as a person with undiagnosed autism, I was always trying to fit in which now that I look back, it's like, no, why was I trying to fit in? Why couldn't I just be me? I remember there were times where people would be like Jairo, you know, just be yourself or you're trying to, they wouldn't say be ourselves like, oh, don't try to pretend to be someone else which came across the wrong way, because I was trying to do the social cues. Do the, okay, What do people like talking about? I don't like talking about this, but I’ll talk about it. Oh, we'll talk about sports cars. I'm not really into sports cars, but you know, and I learned about stuff that I really wasn't interested in. But then I also had to learn that, look, not everyone's going to want to talk about my special interests. I was like, oh, have you seen this TV show? It's great. It's like, nah, I'm not really into it, but you should watch it because it's fantastic. It's like, okay, Yeah, and then they change the subject and then you go on back to it and it's like, so I’ve learned those things. And by meeting other people with autism and people with disabilities in general because I don't like to be too focused on autism, the diversity, and the intersectionality of things where I'm like thinking, okay, I'm a person on the autism spectrum. There are other people who have, they're on the spectrum, but maybe they have also a physical disability. They're also part of, maybe of a community that is marginalized. And now they have it even more challenging, it's like, oh my gosh, you have to have those things in mind. And I don't know what I would've told myself if I was able to travel back in time, I wouldn't be like, oh my gosh, I didn't tell my younger self what to do or I don't know what to say. Because I don't know if I would've been open to it. Maybe I just wasn't ready for advice. I just was doing my thing. I was like, dude, get away from me, man. I don't want to hear what you have to say. I don't know. So it's very tricky. It's a very good question. And I’ll bet you like a week from now, I’ll be like, ah, that's what I should've said. But you know...

Jeiri Flores: We see the importance of advocacy grow. And as we see new LEND programs join our network and new states to bring on and be willing to take the challenge of running a LEND program. What would you say to these new LEND programs as they recruit their self-advocates, as they create their curriculum of advocacy, what would you say to them? What would you wish that they had that you had to create at the mailman center that didn't exist before you?

Jairo Arana: I think it's good to have a relationship. Relationships what has helped me, my relationship with my mentor and with our self-advocates who go through our program. And to perceive the world the way they, you know, try to understand to have empathy, you know, because sometimes it can be challenging. It's like I'm trying to teach something, but I don't know if they're getting it. How do I make sure? And we want people to learn, but we want it to be, when I say fun, not fun as in go on party more like, I enjoy this, I feel fulfilled. So that's one of the things that I think is very important. I remember when, after I did LEND, I was like, oh man, well, Shelly had brought it up at the PWD work group meetings like, Hey, maybe we should have like competencies, you know, that we all have in common, just like the family leaders, the family leadership program has its own competencies. So we came up with a PWD work group. We created competencies subcommittee with other self-advocates, Jack Brad's, Mary Angus, McCafferty Carmen, Shelly and I, we were like, okay, what are some competencies that we could put together? Because one of the things that just blew my mind was like, wait a minute, we have a history. People with disabilities have a history and a culture. And all these things that like, we need to teach this. I mean, this is not need to, I don't like the word need. It's like, it would be awesome to teach it. I'll use awesome a lot. But it's like that, like, Hey, I did not know that, this is an interesting fact. And when you learn from history, when you see, wait, other people have done it before, so I can too, if I just do it right. And maybe, you know, do it better and avoid the mistakes that they may have made in the past. So one of the reasons I love history, by the way, it's like learning from history is like the do's and don'ts when it comes to leadership and also about justice, and then the pursuit for justice, for social justice, disability justice, all the inequities that go on in our world. I mean, when you study history, you're like, I didn't study history, but I'm a big fan of history. I have history books and stuff. I was like, and I'm like, wait a minute! What have we gone wrong? How can we make sure these things don't happen again? When these challenges come up, how do we do it? When, you know, when we learned the history of the ADA, for example, the American with disabilities act, it's like, oh my gosh, that's an example right there of how to do it, of how to advocate for yourself and how to do it peacefully, Non-Violent. Because unfortunately there are tractors out there who try to like demonize you or whatever. You know, it's that thing where you kind of like learn about what are the do's and don'ts. One of the things I think is also very important is teamwork. So with my mentor and I, we created a team, you know, the mentor mentee relationship through that, I’ve met other people in the mailman center and then other people throughout the AUCD network, it's like, wait a minute, I'm meeting other people. We exchange ideas and learn from each other. And then that's been very helpful to me, if anything, that I think should be taken away it's like when it comes to self-advocate, it's like the best thing for, you know, LEND director's self-advocate discipline is create a relationship that, you know, that one-on-one because that helps. What might work for me might not work for someone else. Someone's more visual or visual learner. I actually even bought books about universal design for learning, which is like, wait a minute, you know, are we using plain language? Are we using easy read? And now I'm learning all this. And I'm like, wait a minute. Let's do that. Being open and listening and learning what's out there because there's a lot of resources out there.

Jeiri Flores: The way you captured all of that is really important, especially as all of our LEND programs across the board grow. And they begin to look at advocacy differently. And, you know, to its strength, its belief, it's all the things, you know what I mean? Like, you know, advocacy is definitely like eggs in a cake, water in the bed or whatever it is, you know, we're definitely part of the mainstream ingredients as we continue to build and move forward. And I want to thank you so much for sharing your stories with us, for sharing your time.

Thank you for tuning in to AUCD network narratives. If this story has inspired you to make a change at your center or program, use the link in our show notes for resources and tools to help you lead on. We'd love to connect with you. So visit the AUCD website and click on the submit your story button at the top. We hope to hear from you soon.

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