Celebrating National Cerebral Palsy Awareness Month

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LINDSEY WELLS, HOST: From KVMR and in partnership with FREED, welcome to Disability Rap. 

ALEXA GUERRERO: When I was born, the doctors had told my parents to forget about me and that I wouldn't be able to do anything. 

WELLS: Today, voices from a panel discussion celebrating National Cerebral Palsy Awareness Month. 

GUERRERO: I proved them wrong. 

CARL SIGMOND, HOST: See people for who we are and ask questions. 

WELLS: That's all coming up on Disability Rap. Stay tuned. 

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WELLS: Welcome to Disability Rap. I'm Lindsey Wells. 

March is National Cerebral Palsy Awareness Month. To celebrate, FREED partnered with the California Department of Rehabilitation to host a panel discussion focusing on the transition from youth to adulthood for people with cerebral palsy. We held the event on Zoom on March 4th. On today's episode of Disability Rap, we're going to air highlights from our discussion. The panel was moderated by Ana Acton, the longtime executive director of FREED and host of Disability Rap. 

In 2021, Ana was appointed by California Governor Gavin Newsom as the Deputy Director of the Independent Living and Community Access Division at the California Department of Rehabilitation. Ana was joined on the panel by four people with cerebral palsy. Alexa Guerrero is a systems advocate at Placer Independent Resource Services or PIRS, the independent living center in Auburn, California. During her time in college, Alexa was a Youth Disabled and Proud, or YO! volunteer for the California Foundation for Independent Living Centers. 

This experience opened her eyes to the importance of advocacy. By the end of her time as a YO! volunteer, she knew that she wanted to pursue a career in disability advocacy. Also on the panel was Toni Saia, an assistant professor and the director of the Rehabilitation Technology Certificate at San Diego State University within the Department of Administration, Rehabilitation, and Post-secondary Education. Her professional work history has involved advocating for a progressive understanding of disability within the applied fields, and a shift from diagnosis to disability as a culture and identity. 

Disability Rap's co-host Carl Sigmond and I join in as well as we will have cerebral palsy too. It was a dynamic conversation that could have gone on for hours. Today, we bring you the audio recording of the panel discussion. To watch the video recording along with the ASL interpretation, go to our website, disabilityrap.org. Here's Ana, seamlessly rolling back into the Disability Rap host chair. 

ANA ACTON, GUEST HOST: It is so wonderful to be back here at Disability Rap. It's been a few years. It's so great to see the work that you're all doing to continue this legacy that really started with Toni Sauer, who was an executive director at FREED back in the '80s. Then I was able to host it for some years and now to see Carl and Lindsey really doing an amazing job with hosting it. Thank you so much for having me join. 

I am really excited to be here with all of you today to talk a little bit about cerebral palsy, talk about disability, one of my favorite topics. While I am not a person with CP, I am a wheelchair user and have a disability myself, and so feel like I'm well surrounded with great allies here today on our panel. I just want to start by getting to know each of you a little bit better and get to know who you are, what you do, and a little bit of your disability story. With that, I'm actually going to start with the co-host of the show, Carl Sigmond. Can you get us started with telling us a little bit about yourself? 

SIGMOND: Well, thank you, Ana, for coming back on the show. It is a pleasure to be interviewed by you. 

So, I grew up, obviously, with CP. I use a wheelchair and walker. I obviously have this speech disability. My parents made a very conscious decision that I should be educated in the mainstream, not in special ed classes. So that is what happened.  

And then how I ended up out in Nevada City is I actually attended a Quaker high school semester program right outside of Nevada City the year before college, and that was really the first time I was out on my own, 3,000 miles away. 

ACTON: Before you go on more, Carl, let me just stop for a second because you took me right back. I was working in Nevada City area during that time, and there was this rumor about this guy, Carl, who had moved into the area. I'm pretty sure the first story I heard about you was that you had rappelled off the South Yuba River bridge to the water. Do you want to share a little bit about that? 

SIGMOND: Oh Ana, you are sharing all of my secrets. So real quick, for the record, that was not when I was a high school student. That was later. But yes, it is true. And I actually did it twice. And it’s actually a much easier way for me to get down there. Getting up is another story.  

ACTON: Well, before we move on then, so I'd like to actually go to one of the next panelists to get a little bit on, again, your disability story, your story of who you are, where you came from. 

I'm going to go on over to Toni. Toni, this is the first time that I've had an opportunity to meet you and to interview you. I've heard amazing things so tell us a little bit about yourself. 

TONI SAIA: I am a very proud disabled woman. I think it's important to lead with that because I think oftentimes people see disability as a tragedy, as something to be fixed and cured. For me, disability is a part of my culture. It's a part of my identity. I am very proud to be in the community and then also doing disability work. I truly believe that disabled people should be leading these initiatives, these conversations. We understand our experience best. 

I always jokingly say that I didn't fly out of the womb with a disability culture book, but I did fly out with a lot of low expectations that were placed on me by medical professionals. Very early on my mom retells a story where a doctor shared, "She's a shell, pretty on the outside, nothing going on inside." This is before I had an opportunity to do or be. I am very grateful that my parents did not buy into these low expectations. 

I jokingly say that I am very lucky that I am one of four and the baby. My parents did not have any time to helicopter me, and they were tired. That was the greatest thing that could happen to me because that meant that they just raised me like their other children. That allowed me to navigate the world. I don't want to say that in a way that they ignored my disability experience. They absolutely didn't. At that time, I didn't have the language for that, but really what they were doing was the social model of disability. They were manipulating environments so I could fully participate. 

I am passing over Zoom, but I am a proud wheelchair user. I definitely see my wheelchair as a chariot of freedom. It allows me to navigate a very inaccessible world. Again, early on didn't have the language. We didn't do things that I couldn't participate in. They were definitely manipulating environments and making conscious decisions to ensure that I could.Not only I think so many times around the disability experience we focus on inclusion and just getting to the table, I think more importantly it's not just about getting to the table, but do you feel welcome, seen, and heard at the table? 

That's what I'm interested in. I'm not interested in a long table that just allows us to be. I'm interested in sometimes breaking down the table. Also, again that value. Are we valued as disabled people? Again, I think, so many times in the service world, I think there's this misconception that disabled people only exist to be serviced. I just want to share that we are much more than the services we may or may not receive. We have talents. We have goals. We have skills. We also may use services, but we don't exist in this world to be serviced. 

I'm really, really pumped to be here. I'm excited to be among other disabled people. I just really appreciate, again, the opportunity. 

ACTON: Thank you so much. I feel like we're done. No, I'm kidding. No, but you touched on some really important topics that I think we want to go deeper into today about disability identity and pride, and how many of us-- many people with disabilities are either born into this world or acquire their disability and face a society and world where there's low expectations that you said, and people just don't see our intrinsic value, our skills, the amazingness that we basically bring to this world. We're going to talk more about that. First, I'd like to go over to Lindsey. Lindsey, tell us a little bit about yourself. 

WELLS: I'm a twin, and I was born in the early '80s. When I was born, there was some complications. I asked my dad about this because I wasn't aware at first of what was going on. He said that my brother's heart monitor stopped, so they had to go in and get us. When they did, they had to get us out in a hurry. They had pulled me out first, and I looked good. They sent me aside. They didn't realize at the time that I had spastic cerebral palsy. 

As I aged into schoolhood and went through that, I was in special education for the first four years of my school. Then my mom realized that I should be totally mainstreamed. In that regards, I was like Carl when my parents realized at an IEP meeting that I should not be in special education. Unfortunately, the teachers didn't see it that way. A teacher told me that I would never graduate high school. Well, I proved her wrong, and I even went to college. You never know. You can't just assume that somebody can't do something because of a disability. It doesn't work like that. 

I come from a big family, and I'm one of the babies. I was never treated like I had a disability. I was always treated that I had to learn to do things more independently than I would have if I hadn't had a disability. I always knew I had a disability, but when I reached school age, I finally figured out that yes, indeed I have a disability. My family had never really told me. It was the school kids that told me. 

ACTON: Some interesting themes too. It seems like for Carl, yourself, and Toni, that your parents, your family actually chose to basically see you as a whole person and have similar expectations, would it be safe to say, as they had for their other children? 

So Alexa, welcome again. Tell us a little bit about yourself. 

GUERRERO: I'm Alexa. I grew up in Santa Rosa. I was always in General Ed. When I was born, the doctors had told my parents to forget about me and that I wouldn't be able to do anything. Not only did I prove them wrong, I graduated, and then I graduated college as well with my BA in Child Development from Sac State. I use an electric wheelchair to get around. The reason I like to tell people that I ended up in Sac is because I attended camp walk because we were under the stars, and we weren't inside at all. I knew I always wanted to go backpacking, but I knew that I couldn't because of my disability until I found that camp. Never underestimate yourself. 

ACTON: Well, I definitely share your love for the outdoors. I was someone who acquired a disability unlike you all who were born with a disability. I acquired a disability as a freshman in high school. It took me a while to get onboard and then realized that I could do anything that anyone else could do. It just might look different. There might need to be different accommodations and considerations. I wanted to follow-up with a couple of things that came out of your introductions. One of them is something, Toni, that you mentioned and that is finding your disability identity. There was discussion about disability pride. 

I'm curious. Toni, I'd be happy to start with you. What's that process like about really finding disability identity and having pride in who you are when maybe the rest of the world is telling you that you're less than? Toni, do you want to start? 

SAIA: Yes. Thanks so much. I thank for me disability culture and disability pride, I was able to engage in that once I was really connected to the disability community. Being in community and being immersed in spaces where we're embracing disability as a culture identity, I had the opportunity to learn about my history. Just as an example, how many people take an average history class where we learn anything about disability history. The answer to that is probably very few. This is interesting given that disability is the largest growing minoritized group. It is the only minoritized identity that cuts across every other culture and experience. This erasure of our history is very telling about how we feel about the disability community systemically and societally. 

When I was in community where I had opportunities to embrace that, when I've engaged in advocacy spaces where they're being led by other disabled people, I had an opportunity to see my disability in another framework. I think that really changed the game for me. Disability pride and culture does not mean that you don't have any challenges. We are navigating in a world that's not made for us. Of course, there are challenges, and barriers, and hurdles, yes. However, I think I'm able now to make the distinction that the problem is not me and my body and the way I navigate the world. The problem is society. That distinction allows me to explore my identity, my culture as a disabled person. 

I think that shift in burden of where the burden lies. That doesn't mean that I'm not frustrated when I can't access a space. Absolutely. I'm no longer angry at my body and how my body shows up. I'm angry that I do not have access. I think I was able to make that shift really being immersed in disability spaces where people are showing up unapologetically themselves. That really gave me an opportunity to really question society as a whole. Like any other form of pride and identity and culture, it's not one directional. It's not like you achieve it and it's like, "Checkbox, I have pride." It shifts depending on the spaces I'm in. 

For example, if I'm the only physically disabled person in a space, the safety I feel around my identity and culture may be different if I'm among my people, I call them my people, my community. That is not really a me problem. That's a society problem that we're not creating safe enough spaces for people to bring their whole self to the table. That's true in the workforce as well. I often hear, "Oh, they're not out as disabled," or "There's stigma." It's like, "Well, can they be out? If they become out, what do we do to embrace their experience?" 

ACTON: I think it's really important to just recognize that the disability pride piece doesn't mean that everything's easy. It doesn't mean that there's no issues. It doesn't mean that we don't have hard times at times. It's not trying to pretend all that isn't there. I know a lot of people who come to their disability in different stages in their life. Often, there can be trauma involved, there can be grief involved. There are all those pieces. Those are all real. To the point of finding disability community, Carl, talk to us about what was that path of finding community, disability community. That didn't come immediately for you, I don't think. 

SIGMOND: No, it didn’t come really until I found FREED, or put another way, FREED found me. And then FREED, which I think, everyone here knows, but maybe not everyone on the podcast… So we are the Independent Living Center serving five counties in northern California, and we are a peer led disability resource and service agency. And that peer led piece is key, because we are people with disabilities providing services - and dare I say mentorship - to other people with disabilities and older adults in the community.  

ACTON: Carl's going back to that piece about finding community by connecting with others with disabilities. I think one of the things that struck me as Toni and you were both talking was how we're really flipping around just trying to change and flip society's view on disability. There's been this history on this medical model that we talk about on disability and then really looking more as a social model on disability, really turning upside down our internal and society's view on disability, which I would argue is maybe one of the biggest barriers that still exists for people with disabilities is just society's view and lack of expectation and belief in us. 

For Lindsey or Alexa, both working within the Independent Living Movement, working within that social model on disability, what would you add? What can we do to really start the community and society really understanding the value of disability? 

WELLS: I would say that we have to be out in our communities talking to people, getting them educated on what we need to say to them about not only cerebral palsy but all kinds of different disabilities. The medical model might have been a hindrance for us. Our social model could be wonderful, but there are doctors and there are people out there that still think of the medical model first. If we're out in the community saying, "Hey, no. Wait. Check this out to see who we are as individuals first," and then we can move forward. We have to be those advocates not only for ourselves but for everyone that has a disability. 

As my job at FREED, I'm working to advocate for people with disabilities, but I'm not working by myself. It's a joint effort with the person with the disability and myself. I think if we get the community together and just be out there and say, "This is us, and we're not going away. Figure it out." [chuckles] I think there is a social stigma and it has to go away. It's only going to go away if we come together and communicate that to the public. 

ACTON: Thank you so much. We've been talking about the social versus the medical model of disability. This is where the conversation took us. Alexa, I'm curious to hear from you, where do you see in your life, even today, that medical model show up versus a social model? I'm just curious, do you have any examples of experiences where you still see that old historic view on disability? 

GUERRERO: Oh yes, definitely. People always assume that I can't think for myself, or I can't get around by myself, that I can't have a job or be married. They just assume that I'm from a group which is not very accurate at all. I have my own apartment with my own two crazy dogs and my husband. This is why I have been working on disability etiquette training. So far, I have presented to the Office of Elections and the Auburn Police Department. This is still in the works, but I'm hoping that one day this will be mandatory for first responders and everybody in the workforce mainly because it's already 2024, and I don't think society should have this certain view on people with disabilities. 

ACTON: Thank you so much for sharing. I think that it's interesting how often there's misunderstanding around disability where if you have a speech disability, if you use a wheelchair, people might assume other things about you. I want to shift just a little bit here and talk a little bit about employment and your road to employment and what that experience was like for you, including-- It's not coincidental, again, that I think that all of you are in a disability-specific field. Was that by choice or is this the only option that you felt like you had? 

For me, when I first got into the workforce, I was trying jobs that weren't disability specific, and I had a really hard time getting hired. People thought it was a liability. They weren't sure how I was going to be able to do the job. I don't think that's the case for all of you. Talk to me, what was that experience getting into the workforce and what barriers did you encounter when doing that? We'll start with-- let's see. I'll switch it up just a little bit. Lindsey, do you want to get us started on that? 

WELLS: I have my degree in early childhood education, and I went to go look for jobs working with pre-schoolers. They said, "Oh-- " They would interview me and want to see me. This is way before the pandemic. As soon as they saw me in person, they would change gears. "Oh, you're overqualified. Oh, we don't need this. Oh, the position's been filled." For me, it was a lot of your experience as well. I came to FREED saddened about not being able to work with children like I had intended, but when I became a part of FREED, I realized this is exactly where I needed to be. 

I am more thrilled now to be a part of FREED and to have the association of Carl, and all of my colleagues, and Alexa, my peers, advocate colleague. It wasn't the path that I chose to begin with, but I ended up in the right place. 

ACTON: I can relate. What about you, Toni? Talk about how you got to what you're doing now and what did you do? 

SAIA: It's yes and-- these questions are nuanced. I often joke around that I eat, sleep, dream disability because I don't get to turn it off at 5:00 but also because I do disability work as a assistant professor at SDSU. I'm teaching within the rehabilitation counseling program, and yes, that is very disability-related. I would say two things. When I was going through school, I originally wanted to be a speech therapist, but I realized earlier on that that role wouldn't give me enough of the advocacy role that I wanted, and so I switched to rehab counseling. 

I want to say that even when you do disability work, it's not the employment barriers that you might face in the in the job process. As an academic, academic jobs are really-- there's a lot of ableism in them. All because you do disability work doesn't mean that there are no ableism in the process. When I entered the job market, I had this feeling of I never knew if I wasn't getting the job because I wasn't qualified or because that I was disabled. That's a feeling that I think disabled people feel all the time. It's like, "Did we not get this opportunity because we're not the best fit or because of the attitudinal barriers?" 

I remember earlier on, I didn't immediately know. I kept my options open. Do I want to be in academia? Do I want to be in-- I remember one job I applied for, I had to enter the back alley entrance and pass all the garbage. I knew then even though I was really qualified for the job, they weren't going to give me the job because they weren't going to feel comfortable watching me every day go through the garbage, and they weren't going to come up with another solution enough to hire me. 

I think it's a real thing to acknowledge that there are barriers that gatekeep disabled people from other fields. That does not mean-- for all my people listening, I love my job, and I think that disabled people should be in my job. I think it's really important for my students to have a physically disabled faculty member. I think representation matters. I think I'm great at my job, not in spite of my disability but because of my disability, because I add a lens that no textbook can teach you. 

I think it's also important to acknowledge that people experience attitudinal and environmental barriers related to the job in the job market. A lot of times, it's the attitudinal barriers. It's not just that there's no ramp, there's no ASL interpreters. Yes, it's those things, but it's also the attitudes. I do worry that oftentimes, unintentionally, we funnel disabled people into jobs where we already have connections rather than what are best fits for them because of these attitudinal barriers. 

I think that that sometimes happens in DOR where it's like, "We might have a connection with this group so we might encourage our clients to go that way." That doesn't necessarily mean that that's what they want to be. I would say that I think that attitudinal barriers are a real thing, but I am proud that I am in the disability space. I think this is where I belong. Not every disabled person should have to do disability work to have a job. That's the point I'm trying to get at not myself. I think it's ridiculous. If you want to be a hairdresser, you should be able to be one, just as an example. 

ACTON: Carl, what do you have to add to the conversation? 

SIGMOND: I think it was my time at FREED that really showed me how I could ask for reasonable accommodations and what those accommodations would enable me to do. I’ll give you, one example: Before I got to FREED, I was in another state, and I was beginning to notice how much opportunity was opening up for me when I had someone repeating what I said in a professional context. And I went to someone who was actually rather high up in that state’s rehab department, and I asked her: can I have an employer pay for this service as a reasonable accommodation? And that person said no. And then I got to FREED, and Ana, you were still here, and the moment you saw how it worked, you said, sent me the bill. So that really, really opened so many doors. I would argue it enabled me to step into the management position I have now. So just one example of many.  

ACTON: There's so much we could talk about. There are so many different topics, reasonable accommodations, employment. We only have a few minutes left. I'd like to do a lightning round with each of you and really ask you to respond to what can the listeners, those listening right now, do to address ableism to ensure that people with disabilities are fully integrated into all aspects of society, whether we're talking-- just all aspects. Lightning round each of you. Alexa, I'm going to have you go first here. What are the things those that are listening right now can do to help address the issues we've been talking about today? 

GUERRERO: I would say always ask, never assume, because we know ourselves best. 

ACTON: Lindsey, what can those listening do? 

WELLS: In the community, start talking to people about what ableism is and why it's not appropriate at this time. 

ACTON: Carl? 

SIGMOND: See people for who we are, and ask questions.

ACTON: Toni, what can we do as a society, those who are listening, what can they do today to help address ableism? 

SAIA: Support and uplift the experiences of disabled people in whatever your roles are. Look to elevate those experiences. Also, it is your job to educate yourself on ableism. Yes, disabled people can be leading those conversations, but it is not our burden to carry alone. All of you have a duty to read, to engage in conversations, and learn and educate yourself. Remember, make sure you're getting the education from disabled people. 

WELLS: That was our panel discussion in honor of National Cerebral Palsy Awareness Month, which is this month. It was hosted jointly by FREED and the California Department of Rehabilitation on March 4. Disability Rap’s co-hosts, Carl Sigmond and I, were joined on the panel by Alexa Guerrero, a Systems Advocate at Placer Independent Resource Services, and Toni Saia, an Assistant Professor and the Director of the Rehabilitation Technology Certificate at San Diego State University within the Department of Administration, Rehabilitation, and Postsecondary Education. Ana Acton moderated the discussion. Ana is the Deputy Director of the Independent Living and Community Access Division at the California Department of Rehabilitation. To listen to or watch the full panel discussion, along with ASL interpretation, go to our website, disabilityrap.org. 

And that does it for the show. Disability Rap is produced and edited by Carl Sigmond and Courtney Williams. Special thanks today to Ana Acton, Kim Rutledge, and the whole team at the California Department of Rehabilitation for helping to make our panel discussion a success. 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 are brought to you by KVMR in partnership with FREED, and we’re distributed by PRX, the Public Radio Exchange. I’m Lindsey Wells with Carl Sigmond for another edition of Disability Rap.