A team of disability advocates creates True Tales to give voice to the personal stories and lived experiences of disabled storytellers. We offer our unique, often underrepresented perspective, to the growing community of podcast listeners worldwide. This episode is being released in March, in honor of Women’s History Month. We welcome back Kristen Gooch, the storyteller from episode 2, as host. She is joined by our two storytellers, producer, and sound engineer who are all powerful women with disabilities. According to the CDC, one in four Americans lives with some kind of disability. That’s about 61 million adults with 61 million experiences and points of view about what it means to live with a disability. Recognizing that everyone's life is enriched by the inclusion of multiple voices, Art Spark Texas, has been training Disability Advocates as storytellers for over 20 years.
Host - Kristen Gooch Kristen Gooch is an actress, poet, and advocate from Austin, Texas with cerebral palsy and uses a wheelchair for mobility. She hopes to broaden her horizons and branch out into film and television someday. She currently facilitates a peer support group through Imagineart called Adapting Sheros for women with mobility disabilities. She is a company member of TILT Performance Group and Paradox Players.
Jourdan Huerta Jourdan is a performer who loves singing, dancing, and making unique greeting cards. Jourdan is also a huge advocate for mental health. She advocates for people with disabilities and for people that have non-epileptic seizures due to her personal experience with psychogenic non-epileptic seizures. Jourdan has such determination! She recently joined the TILT Performance Group and can’t wait to start her next project and theater journey. Keep it up, Miss Huerta! Social media links: Instagram: https://www.instagram.com/greetingsbyj/?hl=en, https://www.instagram.com/jourdanthetheatregeek,
Sharizod Aboii Sharizod Aboii is a native Austinite who grew up in Pflugerville, Texas. She was born with arthrogryposis, a non-congenital condition that affects 1 in 3,000 live births. She is a graduate of Texas A&M University and is currently working on her MSW at Texas State University. Sharizod hopes to encourage and empower others through their journey in life with her shared experiences.
Welcome to The True Tales by Disability Advocates, authentic voices of people. thriving with disabilities. Where individuals use the art of storytelling to change the world. The True Tales by Disability Advocates Podcast is produced by Art Spark Texas, Speaking Advocates Program. Keep listening to hear how life's challenges can spark a desire to speak out and advocate for yourselves and others.
MsBoye:
You are listening to"Girl Power", Episode Five of True Tales by Disability Advocates. We're the podcast where Advocates harness the power of storytelling to build community with their peers and hope to develop empathy in others. True Tales is created by a team of Disability Advocates to give voice to the personal stories and lived experience of disabled storytellers. We offer our unique and often underrepresented perspective to the growing community of podcast listeners worldwide. Did you know that according to the CDC, one in four Americans live with some kind of disability. That is about 61 million adults with 61 million experiences and points of view about what it means to live with disability. And so recognizing that everyone's life is enriched by the inclusion of multiple voices, Art Spark Texas has been training Disability Advocates as Storytellers for over 20 years. This episode is being released in March in honor of Women's History Month. And so we welcome back Kristen Gooch storyteller from Episode Two as our host, this time. And she is joined in this episode by two storytellers, a producer, and a sound engineer who are all powerful women with disabilities. Our first storyteller describes herself as an artist with a disability and a dream. She is an entrepreneur running her own business, an actor, a singer, and much more. She seems to have an endless fountain of creative energy and in her spare time, she makes beautiful ASL music videos. Her story,"My Seizure Journey", is about the impact of a new diagnosis on her life and her path towards self-care and self-acceptance. Our second storyteller is committed to being an advocate for herself and for others, but she also challenges the very use of the term disability in general. Born and raised in Austin, Texas by parents who successfully advocated for her since she was a child. They always included her in that fight, which empowered her to become the Warrior Woman Advocate she is today. She brings us a tale about her triumphant battle against the blatant ableism of her art professor when she was in college as an undergraduate. We are so glad you've chosen to take time out of your day to experience a little taste of our"Girl Power."
Kristen:
Welcome to The True Tales by Disability Advocates, the podcast where we change the world one story at a time. I'm Kristen Gooch, your host for this episode. Our guest Jourdan Huerta and Sharizod Aboii share tales using the art of storytelling to share their stories of how they learn to live their authentic lives. Our first guest, Jourdan Huerta shares her story,"My Seizure Journey" about developing P N E S and the many coping strategies she's learned to help her adapt to her new reality. Welcome, Jourdan. Before you share with us, would you please let our listeners know what led you to The Speaking Advocates Program?
Jourdan:
What led me to The Speaking Advocates Program was its amazingly talented group of panelists I saw at the showcase a while back. And I thought, how cool would it be if I did something like this? So I did and it was the best decision I've ever made.
Kristen:
Thanks, Jourdan, we're glad you did. All right, the floor is yours.
Jourdan:
Hi, my name is Jourdan Huerta and this is my story,"My Seizure Journey". In October of 2019, I was diagnosed with Psychogenic Non-epileptic Seizures, known as P N E S. What I remember most about 2019 is that was the year that I was diagnosed. I remember back then, I was able to go places on my own. I was able to go to the mall with friends without having to worry if I was going to have a seizure from the big crowds, or if I had a phone to call my mom if I needed help. I didn't need any attendance to help me go places freely. I could do things I enjoyed. But what do I really miss? Epsom salt baths, swimming, roller coasters, I can't even have Starbucks coffee because of the caffeine content. I mean, who drinks decaf, coffee?(laughs) Just kidding! But this is my new norm. Not having that independence and being faced with having different attendants with me can be quite challenging. Sometimes you just need time to yourself, time to recuperate or have some personal space. I tell myself every day,"I can get through this. Keep being seizure-free. You can do this. You got this." But this focus can also cause another seizure. Slowly I'm learning different techniques to manage my stress. 2021 began better because I started focusing more on my breathing techniques and using breathing exercises. I do meditation and take the vitamins one of my doctors recommended. I changed my diet to plant-based because we found out that really helps with seizures. And trust me, not having hamburgers and switching to veggie patties can be quite a challenge, especially when you're used to eating meat. But I'm glad because every day I pass by these group of goats that I know will be eaten because of these trendy tacos called Birria Tacos.(laughs) But seriously, I know I've had fewer seizures due to my changed diet. Meditation also helps, thanks to my small circle of support I have in place today. I have a doctor that specializes in PNES seizures. I have a mother who is also vegetarian. I have friends that I can depend on when I get stressed. I know now that I am not alone, and that it gets better. Yes. I've learned that life isn't always fair, but life is too short so I'm going to live it to the fullest.
Kristen:
Welcome back, I'm here with Jourdan. Jourdan, thank you for sharing your story with us. I know that losing your independence and learning how to make adaptations, can be difficult. To not be able to do what you want to do and go where you want to go, or just have time to yourself, that had to be hard and very challenging. Also, I can tell that this was a very personal and a very difficult experience for you. Walk me through the process, what was it like for you to have to sit down and just put everything in writing? How difficult was that?
Jourdan:
It was quite a challenge, um, but in the end, I think overall, it really helped me. With Speaking Advocates, you learn a lot, you know, you go from, storytelling and storymaking to Advocacy stories and it just gets expanded. That's why we're called Speaking Advocates.
Kristen:
Well put, it had to be very cathartic for you.
Jourdan:
Yes, very much so.(laughs)
Kristen:
Alright, will you please tell our listeners, what did you take away from this experience?
Jourdan:
What I learned is everyone is working on something, you know, and everyone has, needs that they need to address. So I'm a true believer in therapy and medicine and eating well, because you know, I believe that when you eat well, you feel well. And that's what I believe in... so...
Kristen:
That's wonderful. What impact do you hope your story has on our listeners?
Jourdan:
That it's okay to be different and that it's okay, you know, to ask for help and have people that are available to help you when you're struggling and figuring out things, especially when you have PNES, having that support is really important.
Kristen:
Thank you Jourdan so much for joining us today and giving us a look into your experience of adapting to P N E S. We look forward to watching your journey unfold and to hearing about your future projects. If people want to connect with you, what's the best way to do that?
Jourdan:
You can find me on Facebook and Instagram as well as TikTok at J O U R D A N the Advocate, or you can also check out my future projects on Facebook and Instagram@greetingsbyJ.
Kristen:
Perfect! Stay with us for our second guest Sharizod Aboii. Welcome back to True Tales by Disability Advocates. Our next guest Sharizod Aboii shares her story,"I sure showed Miss Puppet." Welcome Sharizod, before you share your story with us, please tell our listeners what led you to The Speaking Advocates Program?
New Speaker:
Thank you, Kristen. I got involved, I believe it was in 2015. I can't remember exactly how, but I believe I either was on a listserv for the organization or I had actually visited the website. And I do remember reading some information about the Opening Minds Opening Doors program. And after reading the description, I thought it was a really interesting program to be able to share, you know, how my experiences and challenges, how I was able to overcome them and hopefully help others that may be dealing with similar challenges. With being someone born of a physical limitation I do know that, that you know, people see me differently. I don't see myself as different, but they see me differently. And that does lead to, you know, you being treated differently sometimes. Um, and so I just thought it was a really great opportunity to be able to share my stories.
Kristen:
Yeah, that's so true. I know with myself, being born, physically disabled and I don't see myself any differently, but I do know that oftentimes, yeah, we get treated differently. Prior to getting involved with Opening Minds, Opening Doors and Art Spark were you involved in any kind of advocacy organization or arts organization for people with disabilities?
New Speaker:
That's a good question, I can't say that I actually was, um, I did do my own, way of showing what I can do with my craft shows and my artwork. So I would use my artwork to, share what I was physically capable of doing and sort of inspire others. And I had actually been invited a couple of times to local elementary schools to talk with little kids, um, about being different and your different abilities.
Kristen:
That's amazing.
Sharizod:
Thank you.
Kristen:
Yeah, and it shows young kids, you know, not to fear someone with a disability. All right, well, let's listen to your story. I know our listeners are going to love it.
Sharizod:
My name is Sharizod Aboii and this is my story."I sure showed Miss puppet." My junior year of college, I decided to take an art class. It had been a while since I had last created art. My other courses lined up that semester were challenging. This class would be equivalent to a summer vacation for my mind. The class was in the architecture building. It was a strange building. It had that professional office, like smell, making anyone who walked through the doors automatically feel like someone of importance. I walked in with my head up high. As a natural born artist, I Sharizod was in the building. I felt my excitement grow as the classroom became closer. I had never taken an art class in such an important feeling building before. Previous art classes taken in middle school and high school were referred to as"simple electives", here in this building people made art a career. As I walked into the classroom, the desks were taller than I had expected. The scents of charcoal paint and paper, put a smile on my face. The Professor walked in quietly and slowly. Kid you not, she looked like one of those puppets from Mr. Rogers' Neighborhood of make-believe. Oh, and her voice truly gave it away as being an original puppet with her high pitched raspy voice. Just like all the other first days of class, the professor took time to go over the class expectations and the syllabus. At the end of the syllabus was the ADA statement stating that classes should make reasonable accommodations for those with a"Disability." Disability? Me? Nah... I have physical limitations, but not a"Disability" requiring many accommodations. At the end of the class. I noticed the Professor walking up to me. Oh yeah, she's probably going to ask me what accommodations I might need. After all, I look like I have a"Disability" to her."Hello! I know of just the right class for you." What?"Oh no, I'm in the right class.""I don't think this class is a good fit for you. It's fast paced and will require the use of tools that I'm sure you will have difficulty with." What? Did I just hear her right? Was Miss Puppet telling me I could not take this class? Didn't she just read the ADA statement on her syllabus? She doesn't even know me! I took a deep breath(sigh) and explained to her that I was comfortable with asking for assistance from my classmates if needed. She responded."Your classmates will be too busy working on their projects to assist you." I continued to share with her that I knew of a classmate in the class. She was a friend of mine. In fact, we lived in the same dorm. We had already discussed the possibility of my needing her assistance and she was fine with it. She responded," Well, we'll see." Success! So I thought. At the end of the second class, she came up to me yet again!"So, I've talked with the other professor about fitting you in their class. All you have to do is go to your counselor and have your schedule changed. Seriously? Here, I was thinking the storm had passed, when I was only looking through the calm eye of it. Leaving the class furious, I was determined. I was not going to take that other class. Ready to fight, I headed straight to the student disability office. Miss puppet was in the wrong, of course. She eventually hired a graduate student to"help" me. Yeah. She hired him to sit around. I didn't need him. He came for about three classes and then stopped altogethergether. Oh. In our first project, we had to turn in, guess whose project was the quality the professor was looking for? That's right. Mine. She had everyone turn in their projects to the front of the class. Of course, she wasn't in, when we turned them in, therefore she had no idea whose project belonged to who. As she strolled down the line of projects, paused near mine."Now, this here is the quality I expect from each and every one of you. In fact, it has a lot of the things I'll be teaching you this semester." Not wanting to make the others jealous I kept a straight face and nodded in agreement with the professor. On the inside, I was screaming"YES!" And throwing the biggest private party ever. I not only showed her I belonged in the class, I was advanced for this class. Yep, that's right. Sharizod wasn't going anywhere. I sure showed her.
Kristen:
Wow, what a great story. I'm so glad our listeners got to hear it and celebrate right along with you at the end. Unfortunately, it's not uncommon for individuals with visible disabilities or visible, uh, physical limitations to be underestimated. That professor who knew nothing about you, would already jump to the conclusion that you didn't belong in her class! tuts) That's terrible. So what was the rest of the semester like with Miss puppet?
Sharizod:
Well, I was actually able to stay in the class. I did all of the projects and I found out later that, she rarely would give A's. She was a tough professor, she was very harsh on everybody. Um, but I do remember, just having to go up to her the last day of class and face her and just say," So how do you think I did in your class?" And, I just remember her giving me this smirk and sort of like a smile as well and she had to admit that I did a really great job. So yeah, I ended up with an A, and I proved her wrong.
Kristen:
Congratulations!
Sharizod:
Thank you.
Kristen:
So, I hate to ask this, but, looking back, would you have handled it differently?
Sharizod:
laughs) Uh, probably not, to be honest. I think sometimes people think they can get away with doing things and they expect us to not react and just sort of take it. So you know, not only was I really standing up for myself, but I really felt like I was standing up for anybody else that might've been in that same situation. I think it really has to do with how I was brought up. I had my parents as an example throughout my entire life. Seeing how they would have to stand up for me, um, as a young child. They had to go through a situation where the school district wanting to put me in a special education class. And they had to stand up and say,"No, she's going to be in a regular class like everybody else. She's going to be given the same opportunity as everybody else." Um, and I don't think they, I don't remember them ever doing these fights, like in secret. It was something I was always involved with and seeing how they approach the situation. So my parents, they never, you know, blew up and create a ruckus. They knew how to communicate in an effective and efficient way to get the point across and to actually make changes. What was really interesting about this professor is I found that later that she had her own limitations. So I was really puzzled as to why she was giving me such a hard time when she herself had her own challenges and she knew what it was like,
Kristen:
Sounds like internalized ableism to me.
Sharizod:
Probably..
Kristen:
But anyway, that's neither here nor there. What advice would you give to anyone, a student, who's, being, you know, underestimated by a professor or a coworker/ employer, what advice would you give them if they were going through similar situation?
Sharizod:
Don't be afraid to stand up for yourself, to voice what you are feeling, what you're experiencing. I think in our society, it's very easy for it to feel like you are making a big deal out of something and it's only you that is experiencing this and that you're making it up and that is not true. Um, so anytime you feel like something is not going right, and that you are not being treated fairly, speak up, don't be afraid to. And, um, don't be afraid to make a ruckus.
Kristen:
Sure. So that experience happened to you several years ago, now I want to know how has your life changed since then? And what's your latest project or adventure?
Sharizod:
Okay. Well, um, I definitely finished my undergraduate. That was way back in 2009, I got my degree, in business. Currently, you know, I've had some working experiences since then, but currently I am working on my MSW at Texas State. You know, in life, I feel like we have different chapters and sometimes you don't know exactly where you're going. Um, but you sort of just follow the path that you're given and the little cookie crumbles, if you will. I feel like that the path I'm currently on, I'm hoping that it will lead me to being able to continue to encourage and empower others with differing abilities.
Kristen:
You're working on your MSW, have you thought about what kind of population you want to work with?
Sharizod:
Um, yes, I, have two main areas of focus. A lot of my career experiences have been in healthcare, helping patients navigate the healthcare system. Whether that's navigating itself, like where to go, who to talk to, but also providing them with information where they feel empowered over their treatment choices and their options, asking questions, like what type of questions to ask. Again, being an advocate for themselves and understanding, you know, what their options are that they do have a choice. So that's definitely one area and of course my ultimate love is just, again, showing that there really needs to be some changes for people, um, who are living life with limitations. I think advocacy for people with.... And I like to honestly like to say limitations over disability, to me, disability means you're not able to work. I think limitations for me, it's a way of saying that yeah, I might work in a different way. I'm not necessarily able to do the same things in the same way other people are, but I do it in my own way. Um, and so, those are, those are my two areas, healthcare and disability advocacy. I think there's so much out there that needs to be changed. I think people's views need to be changed. We are people that have amazing talents. We've been given the challenge in life to do life as everybody else, along with the challenges we've been given. Uh, so I feel like we do life, if you will, a better in a, not necessarily better way, but we're able to overcome things that I think people, if they were given the same challenges may not have been successful with. So I do hope that whatever I do in life, even with my MSW that I, that I'm able to make a difference for others.
Kristen:
Very eloquently put. Well, I know you will be amazing and your future clients will be lucky to have you.
Sharizod:
Thank you.
Kristen:
Sharizod, thank you so much for joining us today and giving us a look into your experience. We would love for you to come back and share more about your journey with disability advocacy. And if people want to connect with you, what's the best way to do that?
Sharizod:
Um, I would say probably by email, which is really the simplest email, because my name is already pretty challenging. So if you have my first name, which is Sharizod spelled S as in Sam, H-A as in apple, R-I-Z as in zebra, O-D as in David,@gmail.com.
Kristen:
Perfect. Thanks for listening to this episode. Our show is hosted by me. Kristen Gooch produced by Jennifer Howell, edited and mixed by Ms.Boye. Our script and production team includes Joey Gidseg, John Beer and and Toby Al-Trabulsi. Special thanks to Jourdan Huerta and Sharizod Aboii for being our guests. I'm Kristen Gooch and you've been listening to True Tales by Disability Advocates. Don't forget to follow us on Facebook, Twitter, and Instagram.
Kamand:
All episodes of The True Tales by Disability Advocates are free on Apple Podcasts, Spotify, and anywhere you get your podcasts. The program is funded in part by a grant from the Texas state Independent Living Council, the Administration for Community Living and individuals like you. To learn about the Speaking Advocates Program sign up for our newsletter at Art Spark Texas dot org. That's A R T S P A R K T X.org. This free virtual training is open to people of all disabilities, no matter where you live.
