The Kids Are Alright

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COURTNEY WILLIAMS, HOST: From KVMR and in partnership with FREED, this is Disability Rap.
 
DANI ANDERSON: When we’re talking about community organizing, I think it’s really important to find people where they are, and try to get them to engage based on the experiences that they are having then and only then can we help them to expand their experiences and become better involved.
 
WILLIAMS: Today, a conversation about youth engagement and the next generation of advocates in the disability community.
 
MATT BAKER: Now that we live in a post-ADA world where a lot of those things – all of the laws that are supporting us and protecting us from discrimination are there, I think a lot of young people take those for granted sometimes, and not recognize that those can be stripped away so easily.
 
WILLIAMS: That’s all coming up on Disability Rap, stay tuned.  
 
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WILLIAMS: Welcome to Disability Rap. I'm Courtney Williams.

Each summer, California's youth leadership forum brings high school students with disabilities from across the state to Sacramento for a week of learning and fun. The students stay on campus at Sacramento State University, gaining a taste of college dorm life. Often, this is their first time away from their families and support systems. They learn about self-advocacy, independent living, and life after high school from mentors who themselves have disabilities. Our new co-host, Alexa Guerrero, has participated in YLF as a disabled mentor to the high school students for a number of years.

For more on the Youth Leadership Forum and disabled youth engagement more broadly, we're joined by two guests. Matt Baker is the project manager for YLF at the California Committee on Employment of People with Disabilities. We're also joined by Dani Anderson, disability access manager for Ventura County here in California. Disability Raps co-hosts Carl Sigmond and Alexa Guerrero spoke to Matt and Dani last month.

CARL SIGMOND, HOST: Well, Matt and Dani, welcome to Disability Rap. It's great to have both of you with us. Matt, I want to begin with you. Can you begin by telling us more about the YLF program, especially for people who may have never heard of it before?

BAKER: Thanks, Carl. The California Youth Leadership Forum, or YLF, for sure is a high school program for high school-age youth to build self-advocacy and leadership development, all in an environment led and done by people with disabilities. We really believe in the power of young people with disabilities motivating and encouraging other young people with disabilities about transitioning outside of high school and into adulthood successfully, and by teaching and their shared experiences and overcoming the barriers that are out there for young people with disabilities as they navigate life after high school.

Something really unique about the California Youth Leadership Forum is that it's an opportunity for young people to come together in spaces that are celebrating disability, which, oftentimes, there's not a ton of those spaces. It's also an opportunity for young people to engage with other young people with disabilities, where oftentimes young people might feel isolated and not able to necessarily connect with each other more broadly with other people who have lived and shared experiences as them, as being a young person with a disability.

ALEXA GUERRERO, HOST: Dani, I want to bring you into this. What is your experience been with YLF, and what drew you to the program?

ANDERSON: I was a delegate at YLF quite a while ago. I don't say the year, because it was too long ago [chuckles]. When I was 16, I went to the Youth Leadership Forum, and it was my first opportunity to be around kids with disabilities my own age. Where I grew up, it's a smallish town, and going through school, I was always the only kid who used a wheelchair, and I never really got to communicate or engage with kids like me. Getting to go to YLF was a great experience, and it also ignited the advocate in me. I came home different and ready to make change locally.

Ever since then, for most of the last-- gosh, I don't know, 15, maybe 20 years, I've been involved with YLF on the governance committee or helping organize it. I used to live in Sacramento and worked on the program. I've had many hats when it comes to YLF and continuing to keep it going. I get the pleasure of working with Matt on it regularly, and I think that the program is doing a great job of modernizing with the times, but keeping the same historical value, given that it's been around for so long.

SIGMOND: Great. I just want to clarify that a delegate refers to a high school participant in the program. Dani, I want to follow up. You talked about how when you were a delegate, it was the first time you were around other people your age with a disability, and you said it changed you and ignited the advocate in you. Can you talk more about that experience when you were in high school? What changed in you?

ANDERSON: I certainly always knew that I had a disability and that things were different for me, but I think that the opportunity to be around other kids with disabilities at YLF really gave me the feeling of wanting that to happen more. That's why I went back to YLF every year as staff, and wanted to volunteer and wanted to be around people more like me. When I was home and when I went back to school, for example, I tried to start getting involved in and also created disability clubs, disability social activities to be more civically engaged in our area.

I got on the youth commission and tried to bring the disability voice to the table. That's always been something that I, since YLF, have really tried to prioritize in my community is trying to increase the access for people with disabilities to be involved in our community and for us to be invited to tables that we historically have not been invited to, and make sure that when we're at those tables, that our voices carry the same amount of weight as everybody else at that table. That has certainly evolved over the years. I didn't come back from YLF straight-up disability champion, but it was what really started it for me. Being able to continue to be involved with YLF and learn more about the resources that we teach students about at YLF has really helped me to try to figure out how to make a bigger and bigger difference locally, where I am.

GUERRERO: I have a follow-up for you, Dani. From your experience, what is the best and most impactful way to community organize?

ANDERSON: I don't necessarily have one channel, if you will, that I think makes the best impact when it comes to community organizing. I think that, for me, it's figuring out the most thoughtful and impactful ways to get to as many people as possible. I used to work at our local independent living center, and there, there was many different ways that we were able to get people engaged. Whether it was through Zoom meetings. Whether it was through community events at the center. I think it was really impactful when we would go to them.

Really, getting out into the community is very, very important. That's something that we do with YLF as well. I'm sure Matt can talk more about that. This shift to having regional youth leadership forums in addition to the statewide youth leadership forum, I think, is really important because we have to go and find youth where they are. We're not necessarily able to just hope that they all hear about us and want to come to Sacramento.

That's a YLF example, but when we're talking about community organizing, I think it's really important to find people where they are and try to get them to engage based on the experiences that they are having. Then and only then can we help them to expand their experiences and become better involved. I'm big on helping people to get involved in things that will benefit both them as well as the community, and doing so in a joyful advocacy way. I'm not so much an activist, but when it comes to advocacy efforts, I think it's important to just try to meet people where they are and then help them to figure out how they want to be more involved and engaged.

SIGMOND: Thank you, Dani, for that. Matt, I want to ask you the same question. From a statewide perspective, what are effective ways of getting young people involved in community organizing and systems advocacy?

BAKER: I think it's really important for young people, especially young delegates who come to YLF, to learn about their independent living centers and understand that there's a systems change coordinator at all independent living centers, which often leads them to the Do Network. Which is a wonderful opportunity for them to get engaged at a community level in organizing, but then also connect statewide because that Do Network comes together to elevate and amplify different issues that are affecting our communities.

I think that for our young delegates who attend YLF, we really encourage them to get actively engaged in their independent living centers' activities in their local communities, potentially with the Do Network, potentially with their systems change organizers. That's really a great opportunity for them to get involved more in their community. Then also, as more young people are finding themselves on social media or on different platforms, like TikTok and Instagram, I think it's really important to amplify messages and information about uplifting the disability community in those spaces.

The only way to continue improving access for people with disabilities, I think, is about sharing messages and information about disability in positive ways. Oftentimes, disability still is socially seen as a negative. I think as young people use the tools that are out there, most readily available to them, by highlighting and sharing successes of disabled people doing amazing things, and highlighting disability culture and disability awareness, I think that that changes the narrative of disability being a bad thing. Then also in turn leads to better organizing and community resilience.

GUERRERO: My next question is actually for you again. What are some challenges and barriers you see with getting youth engaged in civic life?

BAKER: As I continue to work with young people through the YLF program, I think one of the biggest challenges and barriers might just be the reality that not being civically engaged is the reason they don't necessarily see the connection about why laws, or policy, or any of that impacts them. They don't make the connection right away, that as we live in a post-ADA era, where before the ADA, there were so many young people who had to fight for the rights of people with disabilities, and now that we live in a post-ADA world, where all of the laws that are supporting us and protecting us from discrimination are there.

I think a lot of young people take those for granted sometimes and not recognize that those can be stripped away so easily. That we have to work and continue to not only uphold those laws and those rights, but also expand them and continue to grow them. I think one of the biggest barriers and challenges is just educating young people on the history of disability rights and disability rights movement leaders, so that they can understand and tie that.

Judy Heumann was fairly young when she was fighting for disability rights. Ed Roberts was fairly young when he started his journey of advocacy. I think connecting young people with the fact that you don't have to be an old adult or an older adult or a "old person" to be civically engaged, but you could do it now. There are things that you could do now to uphold the rights of people with disabilities.

SIGMOND: Great. Thank you for that. Something we do here on Disability Rap is to ask our guests to share their own stories. Particularly about their disabilities and how they became who they are today. Dani, I would like to begin with you. It sounds like YLF had a major impact on your life. Can you talk more in general about how you got to where you are today?

ANDERSON: Sure. Thanks, Carl. I'll just start by identifying that I have a physical disability. I use a power wheelchair. I have a diagnosis called spinal muscular atrophy. When I was young, in elementary school, I walked, and then as my disability progressed, I started using a manual wheelchair, and now I've used a power wheelchair for quite some time. Going into YLF, I used a manual wheelchair, and I will say, in that time of sophomore, junior year in high school, it's very much about fitting in. Before going to YLF, I definitely was trying to fit in with the cool kids, not yet realizing that they should be trying to fitting in with me because I was the coldest kid of them all.

I did that, and then after I went to YLF, I realized that I didn't need to try so hard to do that, because I had a community in the disability community that would become my lifelong friends. After YLF, I came home. I've talked about that a little bit already. I then, when I was 20, woke up and decided that I wanted to-- I live in Southern California, by the way, but I wanted to move to Sacramento. I told my parents, and I came from this wonderful, amazing family, very supportive parents that always told me that I should try something. I never got a no. They were very upset that I wanted to move 400 miles away, but were very supportive.

I went on this independence journey, and I lived in Sacramento for about six years. I worked for some state departments, got to work on YLF, then I came home. I started working for the Independent Living Center for several years. Now I work for the county here in Ventura as our disability access manager. Really, my job is to help make our community better for people with disabilities. Make it more accessible, increase access, and really help the community to understand why that's important, beyond just a sense of inclusion, but because we're all going to experience disability at some point in our lives. Isn't it best to know about it and be ready for it when it is going to happen? Yes. In a nutshell, that's my story. Matt, you want to take it out?

BAKER: Thanks, Dani. Yes, my disability story, I grew up as a young person with both chronic health disabilities and mental health disabilities. Both are in the non-apparent disability category of disability. I grew up like a lot of young people with non-apparent disabilities, not recognizing that I was part of a larger disability community. I didn't really have a lot of disability identity. Unfortunately, growing up in high school, I didn't know about YLF as a program. I didn't know that there was a community of people and supports, and services that could help me. I just navigated my disabilities, and I used to refer to them as struggles and hardships. Sometimes I could have tough mental health days, and chronic illness definitely has its rough days for me, too.

I always saw disability as something I was trying to overcome when I was growing up. It wasn't until I was a young adult and I was working at the Department of Rehabilitation as a student assistant. They were asking for volunteers to help with this youth project called California Youth Leadership Forum, and I found myself volunteering, because I thought, "Well, I'm not too far off from a high school youth. I'm like 18-19 years old in college." I was like, "Let me volunteer for this." I got to experience something that a lot of young students, especially non-apparent disabled students, experience, which is this disability joy, and disability pride for the first time.

Meeting people like Dani and Kristina, and other folks that have been involved in YLF for many years. Just that experience of acknowledging disability for the first time through YLF was a wonderful experience for me. I, like Dani, enjoyed that experience so much, I kept wanting to come back. Through that experience of continuing coming to YLF and learning more and more each year about disability identity, disability culture, disability pride, it really instilled in me that disability identity that I had been missing for so many years of my life. It's opened up a whole community of friends and loved ones that I now acknowledge and recognize that I, too, am part of that community.

I'm so thankful every day that I had YLF to lead me to that. I hope for other young people who are experiencing disability, whether it be apparent or non-apparent, that they can experience, whether it's through YLF, because I know not everyone will be able to come to YLF, whether it's our state-wide or regional, that they find that community somehow. Whether it's in-person or online, or both, finding that network of family and support of people with shared experience, I think, is so critical in shaping who you are as a young person with a disability. I'm so thankful and grateful every day that YLF has made that opportunity possible for me.

GUERRERO: Thank you, Matt. My next question is for Dani. Not all jurisdictions have a disability access manager. Can you tell us more about your role? You've already touched on this before, but if you want to expand on this, that would be great.

ANDERSON: Thank you, Alexa. That's a very good question. You're right, most counties do not have this position, especially not like mine. There's a couple of counties that have that title, but it's a little different. It's more ADA-coordinator-specific. While I am the ADA coordinator for the county of Ventura, when they created this position, it was really important that we at the county created this sense of importance on accessibility, which I'm in charge of.

Ensuring that our facilities and our programs are accessible to people with all disabilities is at the forefront, but also that we are increasing access to that civic engagement, that we're creating new and innovative programs to increase inclusion of people with disabilities, to get their voices heard, to change systems and make them better whenever possible. I think the best example of that, and Alexa got to be there this year as well, is that we created the first-ever government and disability summit here in Ventura.

It's a state-wide event where we bring together government entities and disability organizations to really try to bridge the gap that exists between those two entities and bring them to the table together to discuss how we can make things better and how we can work together better. I think that's something that's really important for this access manager position. I work really closely with my counterpart. Well, he's not a counterpart, but he does very similar things in San Francisco, and we believe that that's the only other place in California where a disability access manager like this happens.

We're really trying to encourage other cities and counties to get on board with having this kind of a position because while it's required and important to have an ADA coordinator, there's so much more to this disability work, and creating something like this position in more places in California would be super, super impactful. Hopefully that happens.

SIGMOND: What advice would you have for other jurisdictions in creating such a position? What benefits have you seen come out of it?

ANDERSON: Thanks, Carl. That's a great question. This position was created about three and a half years ago. When I came to my interview, I said, "If you're looking for someone who carries a measuring tape around and can tell you down to the centimeter what everything should be, I'm not your girl, but if you're looking for someone who can help to better coordinate the community to better engage with the disability community and wants to make us as a county, a model employer who has an understanding of the diversity of our community and the power that disability can bring to the table, here I am." [chuckles]

They must have liked what I said because I got the position. When it comes to creating such a position, I think that what it really comes down to is the priority, and really not being a jurisdiction that just wants to check that compliance box, but being a county, or a city, or whatever it may be, that wants to go above and beyond and wants to do better, really. Benefits that we've seen. I hear from community entities at least weekly, wanting me to come and do a training about access, accommodations, accessibility, and what that looks like at the County of Ventura.

I work with HR constantly to increase the accessibility and encouragement for people with disabilities to be hired here, to train hiring managers to have a better understanding and comfort level when interviewing people with all types of disabilities. We've created a disability access strategic plan in an effort to just better set up our county for things from architectural issues to cultural issues to youth leadership to employment strategies. It's really just the prioritization of a broad range of how can we make things better for people with disabilities, but how can we also realize what we can do better in preparation for our own disability experience. I think that's a good summary of what I do. [chuckles] I could probably be here for about three days, but listeners are welcome to reach out to me with questions.

SIGMOND: Matt, where can people find out more information about the Youth Leadership Program? When is the deadline to apply for the next summer session?

BAKER: I encourage people to find more information about the California Youth Leadership Forum, or YLF, by following us on Instagram. I selfishly want to get more followers, which you can find us @calylf on Instagram. There you can find links to our application, flyers to our regional events. You can hear delegate stories. We have testimonial videos on our Instagram and information. We also share a bunch of information about other youth programs that are happening and opportunities for young people with disabilities in their communities.

That's the first place to go, I would encourage people to our Instagram site. Then, of course, you can visit our website, and our website is www.dor.ca.gov/home/ylf. The Department of Rehabilitation has been such a wonderful host to host our website for us, and they've been a wonderful partner of our program for many, many years. You can find information about our application for next summer's program, which is actually out now. We're recruiting for next summer's delegates already, and hoping to get students to apply by the end of January is when that application period will close.

We're also really excited that we're able to bring regional events like Dani had mentioned earlier, bringing programming directly to local communities because like I said, not everyone will necessarily be able to attend the statewide event, but as we continue to grow and expand, we look for opportunities to connect with students in their local communities to bring that same power that YLF does in a statewide form, but bottled up in a mini version of it in those regional events. You can find more information about those regional events and the statewide, either on our Instagram page or, of course, our website as well.

WILLIAMS: That was Matt Baker, the project manager for the Youth Leadership Forum at the California Committee on Employment of People with Disabilities. We also heard from Dani Anderson, disability access manager for Ventura County in California.

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WILLIAMS: That does it for the show. Disability Rap is produced and edited by Carl Sigmond and me, Courtney Williams. You can go to our website, disabilityrap.org to listen to past shows, read transcripts, and subscribe to the Disability Rap podcast. You can also subscribe to our podcast by searching Disability Rap on any of the major podcast platforms. We're brought to you by KVMR in partnership with FREED. We're distributed by PRX, the Public Radio Exchange. For Carl Sigmond and Alexa Guerrero, I'm Courtney Williams with another edition of Disability Rap.

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