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Project S.A.L.T.: Creating Self-Advocate Leaders, with Univ. of Miami’s Shelly Baer & Jairo Arana | EDB 319 – DIFFERENT BRAINS

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University of Miami’s Shelly Baer & Jairo Arana discuss the Self-Advocate Leadership Training (SALT) program.

Shelly Baer is a licensed clinical social worker, disability self-advocate, and the director of leadership training initiatives at the University of Miami School of Medicine’s Mailman Center for Child Development. Jairo Arana is a clinical program coordinator at the University of Miami School of Medicine’s Mailman Center for Child Development. Shelly is coordinator and Jairo a graduate of and trainer in the Center’s Self-Advocate Leadership Training program (SALT).

Project SALT aims to teach a leadership skills curriculum to individuals with disabilities so that they can learn strategies to advocate for themselves and others and to effect larger systems-level change. The vision of the project: to produce an ever-growing cadre of individuals with the capacity for self-determination and independence and the ability to participate in their communities in meaningful ways.

For more about the SALT program: https://med.miami.edu/centers-and-institutes/mailman-center/education/leadership-training-opportunities/salt  

Thumbnail photo credit: University of Miami

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FULL TRANSCRIPTION


Note: the following transcription was automatically generated. Some imperfections may exist.   

 

HACKIE REITMAN, MD (HR):

Hi, everyone. I’m Dr. Hackie Reitman. Welcome to another episode of Exploring Different Brains. And today I’m so glad we have from the University of Miami SALT program that we’re going to learn all about. We’re joined by the program coordinators Shelly Baer and Jairo Arana. Welcome Shelly and Jairo.

JAIRO ARANA (JA): 

Thank you.

SHELLY BAER, LCSW (SB): 

Thanks for having us.

HR: 

Shelly. Why don’t you go first and introduce yourself better than I did to our audience.

SB: 

Sure, hi everybody. Thanks for having us. I’m Shelly Baer. And I’m the director of leadership training initiatives here at the University of Miami School of Medicine at the Mailman Center for Child Development. So I coordinate our leadership development programs here. One of them is project SALT, which we’re going to be talking about today, Project self advocate leadership training. I’m also a clinical social worker. So I do some social work-y stuff here at the Mailman Center, but my main role is teaching and training and leadership skills development. I’ve been working here about 12 years. Thank you.

HR: 

Jairo next.

JA: 

Thank you Dr. Hackie Reitman. Hi everyone. I’m Jairo Arana, I’m a clinical program coordinator here at the University of Miami Mailman Center for Child Development. I did project salt, I’m a trainer and I assist Shelly with our pipeline leadership programs. Project SALT is one of the programs that we do will later on get on into a little more about the programs that we have about advocacy and disability in general. I was in the third cohort of project SALT. And now I came on board Park as a part time consultant and was hired here full time in December of 2017. And have been working since then.

HR: 

I’m gonna get right to it. What is the SALT program?

SB: 

Okay, so SALT stands for self advocate leadership training. And it’s a three day intensive training about leadership and advocacy advocacy for adults with disabilities. So 18 and over across disability, so we take individuals with intellectual disabilities, physical disabilities with autism, sensory disabilities, and we teach self determination, advocacy skills, disability culture, civil rights, communication skills. We have it, it’s very interactive. So we’re not just up there lecturing, the students we like to teach by doing and experiential learning. So we’ve had — it was a grant, it was funded by the Florida Developmental Disabilities Council. And now it’s embedded into one of our training grants that we have here at the University of Miami School of Medicine Mailman Center. And we just finished our 14th cohort last week.

HR: 

Congratulations.

SB: 

Yeah, we’re excited. We keep the cohort small no more than eight to 10 individuals. And I am proud to say that Jairo went through our SALT training, then he can share his story of what that was, like for him. It’s a train the trainer model. So we bring in graduates of the program to come back and teach, teach it, you know, help us teach it. So Jairo I’m gonna let you share your journey. If you and if you you know, want to share your diagnosis and, you know, the how all that worked out for you.

JA: 

I, so, thank you, Shelly. Yeah, I was diagnosed with a llate diagnosis and Asperger’s. Now that was in 2013. That was the same year that, if I get my history correct, I think that’s the year that Asperger’s was taken out of the DSM diagnostic statistics manual on in 2013, at from autism. Anyway, I always identify as a person with autism. It was a late diagnosis. It was something I had to cope with. I had to play catch up, so to speak, like, you know, learn as much as I could about autism. And I was still trying to cope with my late diagnosis. When I registered with with CARD – Center for Autism and Related disabilities, we have several all over Florida. I was on their mailing list. And so they would send me emails about resources. Many of these resources were quite helpful. And one of these resources happened to be project SALT. Project SALT is a three day intensive, it’s cross disabilities. So we have we have people from with various disabilities. And I was still coping with my diagnosis. It wasn’t until day two that I finally it finally hit me. Because it’s so long, it’s like from 10 in the morning to like four in the afternoon. We have several breaks, I stepped away for a break, or the many breaks that we have. And that’s when it finally dawned on me or when I had that moment of clarity where like, wait a minute, there’s so many barriers here for people with disabilities — of all disabilities. I start to notice if like does the the elevator have, you know, Braille on the buttons is it is a drinking fountain low enough for for everyone. It’s I just started to see things quite differently. I think I saw things from a different perspective. And then I’m like thinking okay, well, I had a late diagnosis. That sucks. I wish I would have had the diagnosis sooner or would have put a lot of things more into perspective. But then I was like, Wait a minute. We live in a society that is not — I mean, yeah, we have the ADA, Americans with Disabilities Act, which was signed in 1990. But sometimes it’s like, you know, the bare minimum. It’s like, you know, as long as you’re complying, but not, you know, just complying, you know, fine, but it’s sometimes it’s not. We live in a society where there’s barriers, structural barriers, and I just changed my perspective. I just, I like to say I went “from the me to the we”, I’m like, wait a minute, I have to advocate not only for myself, but for others. And I just started to just from there, it became a big journey.

HR: 

Tell us a little bit about the step by step of what the program involves.

SB: 

Yes. So it’s three days, and day one is all about focusing on yourself focusing on self, because you can’t really be an effective leader advocate. And if you don’t really know yourself and your feelings and what you stand for. That day, we also talk about disability culture, we do the disability civil rights movement, we do a lot on communication skills, listening skills. Jairo just chime in, if I forget anything, but day one is really each day builds on the neck. So day one is really about one’s self. Day two, we broaden it and out to working with others. Because how do you work on a team, you’re interdependence, you know, you’re more power working with others than alone. We do a problem solving method. So I’ll we teach all this and they get a handbook. We use PowerPoints, we use videos, we have some activities that we do. And then day two is also working in the community. So how do you serve on a board? What is your passion, like what are you interested in doing volunteer wise or, you know, disability community wise, so we give them a lot of information.

HR: 

Who should consider joining the SALT program?

SB: 

Anybody who is 18 and over who has a disability, so and it could be a mental illness too. And we actually last year, remember Jairo we had somebody who had more of a mental disability like bipolar or, you know, invisible disabilities, but it’s really open to all individuals who have a disability. And it’s — we interview everybody so that everybody who applies, we schedule an interview with them, because we want to make sure they’re a good fit. And it’s group dynamics two, and then we also we want them to show some interest in learning and growing and how to be if they want to grow their skills as an advocate or leader. Or if they’ve done things already in the community. That is a plus. You know, we want like Jairo had that you know he had those desires to want to grow and improve himself. Um, So we look for that too.

HR: 

What kind of progress would you like to see be made overall in the disability community, especially here in South Florida?

JA: 

Oh, there’s so much but transportation for one. That’s a big issue a lot of people rely on there. We don’t have as accessible transportation as people would like. Public transportation and just being able to plan activities. Because of the transportation services that we have the where things can be a little narrow when it comes to having that flexibility.

HR: 

Which city has the best transportation for those of us with disabilities? Do you know offhand? Like, what’s a model program?

SB: 

That’s a good question. I don’t I think Boston is good as far as transportation because they have collaborated with Uber. We have, you know, the paratransit system, which here in Miami, it’s STS. in Broward it’s something different. But there’s so many complaints about STS here. Yeah.

JA: 

I was gonna mention that I was recently in New York City, but that can be a very overwhelming city, I got overwhelmed. And the days are three that I was there. So but you know, they have the subway. And although that can be made me a little claustrophobic sometimes. But, yeah.

SB: 

I guess another concern that I’ve noticed in the disability community is the transitioning age, when young adults are in high school and they graduate, if they’re not on the College Track, they often fall off the cliff. And there’s not a lot of support services. There’s not a lot of programs. You know, we’re here in the Center for Child Development. So we, you know, but Jairo and I work with teenagers and young adults. There’s many, many programs and services for children. But children grow up. So we’ve run into that as a big gap and barrier.

HR: 

Well, you just hit the nail on the head, because that’s why here at differentbrains.org, we start our internship with our wonderful interns here. They have to be at least 18.

SB: 

Really?

HR: 

Yes. Because, like you say, everyone’s about all the cute little children get a while they grow up. I gotta get a job, they got to go to school, they got to, you know, get in the community. So…

JA: 

Learn how to manage our finances. Learning to be a little more independent, and as independent as possible.

HR: 

Tell us a bit about your connections to the disability or special needs community in general. Jairo, let’s start with you.

JA: 

Thank you, yes. My connection. Well, I had I learned my connection is basically well, my late diagnosis. And then I learned about Project salt through card Center for Autism related disabilities. The vast majority of my friends, the vast majority are either on the spectrum or have some kind of disability. And that’s pretty much the connection I have is after I got involved with this in the world of advocating for people with disabilities, advocating for myself and then advocating for others. I been I’ve just come on board full time with with Shelly since ces 2017. God attended conferences like our CARD conference, up in Orlando also attended our AUCD conference up in Washington DC or our Association of University Centers for disabilities. I’ve learned a lot about disability. And it’s an ongoing learning process for me and I think that’s the, for me, that’s the relation I have when it comes to disabilities, learning from other people’s disabilities because I’m still learning and the way I learned about disabilities is by being involved with other people with disabilities. I got to learn about them and their experience in the world

HR: 

Shelly?

SB: 

Thanks. My connection with disability community is broad and long. I’m old but you know, it starts with having a disability. A physical disability mobility disability, and, you know, feeling are of a community too, like it’s it’s one of my identities, but it’s not my only identity. So it’s definitely shaped who I am. And now I get to work within the disability community and creating these leadership programs for people with disabilities, for high school students and for emerging professionals. So I get to like affect change on a broader systems level. With the work that I get to do, I also created a resource guide called access in Miami. So I’m always attempting to give back to the community. I also did a photography exhibition, showcasing disabled women’s beauty, sensuality, and empowerment. So I’m like, I’m always involved in doing new and creative things for the community, and we work at a place, a center that is focused on children with developmental disabilities. So I feel very blessed that we get to do the work we do, you know, at the university.

HR: 

Why are self advocacy voices, so important when we’re talking about advancing the cause of something like neurodiversity?

JA: 

Well, that’s, that’s a very good question. Thank you for the question Dr. Hackie. It’s, I feel like, it’s very important to have our, our views or experiences, heard or expressed so that people know what it’s like to be experiencing autism and dispel myths that so many myths out there, and also the importance of like, one of the things I’ve learned with my autism experiences, and its mentioned quite a lot is that every experience with autism is different. So that’s something that I’ve also learned by interacting with other people on the spectrum. I feel that with self advocacy, you get to express we get to express our needs, our wants, our concerns, wherever anxieties we have, about being involved in the world, and being able to participate in the world being able to navigate it and in the world around us think that it’s important to have our, our voices or our experiences out there expressed.

SB: 

I think too like, some often people with disabilities were dismissed or things were done for them to them. So it’s really important to have our voices, you know, represented and heard. And not somebody else, like talking for us. The the mantra from the Independent Living rights movement is nothing about us without us. Because many things were always being done for us and to us. So we that’s part of what we teach in Project SALT. You know, getting your voice out heard your, your lived experience, like Jairo was saying it’s, it’s also different for everybody, you know, one, even though I have arthritis, it doesn’t, there are many people that have different types or you know, it’s not visible. So I like I were what you said about it’s one, you see one person with autism, it’s one person with autism.

JA: 

It’s very important for me, like, when I know that the that I don’t have some barriers that other people with autism have. So I make it something that something that I’m very mindful of like, like keep reminding myself as like, if some people have difficulty advocating for themselves, at least, as a friend and as an advocate for others, let not only advocate for myself, advocate for others, and I try to bring them to the table advocate for having them, at least present at least heard or where they’re at right there, at least with the rest of us, and not excluded. And that’s what I tried to do. And I do it by learning from them what their needs and wants are, simply by hanging out with them because they’re my friends. I’ve learned, I’ve met amazing, amazing people. I’ve met amazing people and learn about how their beautiful minds work. It’s like it’s, it’s sometimes it can be a little nonverbal, and I don’t get it. And sometimes I’m like, wait a minute, and then just by spending time with them and getting to know who they are, what their world in our world is like, I get to learn something new from them.

HR: 

What would you both like to cover that we haven’t covered yet.

SB: 

I think I’ll like just share with with Project SALT We’ve, you know, had this now for about six years, seven years, and I notice the growth with some of our individuals that go through Project SALT. You know, you don’t, maybe they’re quiet in the group, and you don’t really know if they’re taking anything in or you know, what they’re learning. But I learned not to dismiss them, you know, even if they’re more quiet, because we’ve had a few, you know, young adults with autism who are more nonverbal, but they’re still learning. And they — so not to dismiss them, you know, take that for granted, that that seemed like a learning for me, because I’ve never worked directly with people with disabilities before, especially people with autism, or people with intellectual disabilities, either. And it just gives me a new appreciation for this group that is often disregarded, or that they can’t do anything, or they can’t work or they don’t have talents. That’s so false.

JA: 

Assumptions are made, and we like to be included in, at least when it comes to the decision making process, we like to be part of like that decision making where we at least get, get to listen, speak up or communicate in whichever way we can. But it can, — it’s at least being there at the table and not like, you know, this decision was made without me, you know.

SB: 

I love that Jairo. I mean, I think to remember the Ricky case, and one thing we we talk about is like knowing your rights, know everybody’s civil rights, and everybody has the right, so we talk about the ADA. And I, we had an example of a young man who did our first cohort or second cohort, actually. And we were very quiet, you know, we didn’t run really sure what was happening. And then he applied for a job in the county. And we heard that he told them, “You better pay me what everybody else is being paid.” And he advocated for himself and he got the job, because he knew, he learned that in Project SALT. So that’s, that’s such a success to us.

HR: 

Can you give us some examples of some of your other positive outcomes?

SB: 

Well, Jairo why don’t you share one?

JA: 

We’ve had a few of them go through our LEAD program, which is our next that next step in our our leadership pipeline Leadership Program, which is here at the Mailman Center. We have a training program, which is called LEND which is our leadership education in neurodevelopmental disabilities. Also UCEDD, University Center for Excellence in Developmental Disabilities. And their every state and territory has a LEND or UCEDD, about 60 throughout the country, Mailman Center has both a LEND, and a UCEDD, and I’ve gone on to do project to do LEND as I was the first LEND self advocate trainee. And then I went on to do other leadership programs, but we would bring in other self advocates, people who have done project assault, and gone on to do our LEND program.

SB: 

And so higher is a success, for sure. He’s one of our shining stars from SALT. We had a young woman that did it, she had spina bifida. And she went on to become Miss Wheelchair of Florida. And she also advocated for beach access in Sunny Isles Beach and she got like the ramp thing gone down the beach. And she’s told us that she gained her confidence from doing project SALT.

HR: 

That’s great. That’s really making a big difference. What is one piece of advice that you’d have for someone who wants to become a self advocate, but doubts themselves?

JA: 

Well. I think what I’m thinking about right now, just popped into my head is like, you never stop learning. And sometimes I think I had to learn by doing. I think I had self doubt at the beginning, right, Shelly? I think I did. I don’t know what else to say. It’s like just you know, get to know yourself. Get to know what your strengths are. skill sets and I’d like to say just go for it. Um, but Shelly, do you have any advice? Because sometimes I’m like, Okay, it should work for me. But…

SB: 

I think too, that is, that’s understandable. And I think what could be beneficial is like finding a mentor, or finding somebody that you trust, and just say “yes”, you know, to different experiences. I did that, you know, because I also had issues with confidence and not thinking myself of self as a leader. And — but, you know, I’m thinking of like our self advocate that we met with yesterday Jairo. Who, who did solve it, and then he didn’t LEND. And he, we definitely know he had, he had a lot of insecurities and doubting himself. But Jairo and I were mentoring him. And I think that’s so important for young people or somebody who is more not sure, you know, not sure where to go or what to do. Say it again Jairo.

JA: 

The mentorship approach, because Shelly mentored me and now when we have self advocate coming into our LEAD program, we mentor that self advocate, because it’s, it’s okay to have self doubts. You know, it’s not ideal, but it’s okay. We’re only human. It’s okay to have that out every now and then.

HR: 

Shelly Baer and Jairo Arana of the SALT program at the University of Miami. Thank you very much for being with us here. We hope you’ll come back in the near future and keep up the great work you do for so many — thanks.

JA: 

Thank you for having us.

SB: 

Thanks for having us.