Independence

For Disability Pride Month, Kaye Love chats to Tanya Winters and Kamand Alaghehband about their stories “Pediacrisis” and “Kamand’s View: No More Prejudice”. Stories about how they navigate the predictable and unexpected barriers they meet daily. We hope your day is enriched by listening to “Independence”. Full transcript available.
World Health Organization on Disability

Guest: Tanya Winters - A Chicago native, Tanya fell in love with Austin after a weekend trip. She loves creating and enjoys pushing the boundaries of arts and disability! Tanya's career as an artist began in theatre in 2005 and shifted to dance in 2007 thanks to a wooden chair and the desire to tell her story. As a student of Austin Community College, she gained an extensive background in improvisation and choreography. She has learned from some of the dance world’s top artists like Alito Alessi Nina Martin, Heidi Latsky, Sandra Paola Lopez, and Stephan Koplowitz.  Tanya started making work of her own and became a certified DanceAbility instructor in 2011. Currently, she is a member of the Body Shift Collective, where she loves dancing, teaching, creating and collaborating with other dancers with and without disabilities. Tanya is the co-choreographer of Together and Apart an ongoing duet that explores the relationship between movement, environment, and the art of human interaction. She hopes that her work will motivate other dancers to think outside the box and erase the line between ability and disability.  Tanya also has a solid background in Social Work, grant reporting, and case management. She possesses excellent communication and organizational skills which help her deal with the complex regulations governing social services. Walk & Roll: https://youtu.be/1IQ6W2NybfA
Constable Pct. 5's Disabled Parking Awareness Video: https://youtu.be/LR0XoXb_w-g
Together & Apart: https://vimeo.com/183923919 And You See Me: https://youtu.be/RSB_WFRbEEI

 Guest: Kamand Alaghehband - My name is Kamand Alaghehband. I was born in Austin Texas, and I have autism. In 2020 the CDC reported approximately 1 in 54 children in U.S. diagnosed with autism is more than all cancer patients combined. But what about us? what happens to our future? What kind of jobs and lifestyle is available to support us. All my life I tried to support not only me but all generations with disabilities.  I am me, I am Kamand. I love Special Olympics. My favorite sports are swimming, basketball, and Track. I am a member of the executive committee of special Olympics athletes leadership in Texas. I created podcasts, TikTok, video games and a variety of health activities during a pandemic to keep the athlete's minds occupied in a healthy way.  Unfortunately, I wasn’t able to maintain some of those activities cause was costing me money.  My mission with my population is to bring peace for today and create a vision for tomorrow for disabled population.  I feel grateful for what I have. I choose to be thankful. I choose to be happy. Gratitude turns what I have into enough and more. My Instagram info is ka.special . My TikTok account is KAspecialglobal.

Host: Kaye Love - Kaye has over eight years of experience working with individuals with developmental

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Segments of this podcast were read by an automated voice. Inconsistencies in pronunciation and tone may occur.

Chapters

• 0:00 Theme Music
• 0:12 Podcast intro Kristen Gooch
• 0:51 Episode Intro - MsBoye
• 4:06 Kaye Welcomes Tanya
• 6:26 Tanya Story
• 10:27 Kaye Tanya Chat
• 13:41 Kaye Welcomes Kamand
• 16:25 Kamand's Story
• 19:28 Kaye and Kamand Chat
• 21:22 Kaye Episode Outro
• 21:53 MsBoye Hey help us out
• 22:39 Kristen Podcast Outro

Transcript

Kristen: 0:09

Welcome to 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 ourselves and others.

MsBoye: 0:50

Hello, you're listening to True Tales by Disability Advocates, the podcast where Advocates harness the power of storytelling to build community with their peers and hope to develop empathy in others. This episode is being launched in July to celebrate Disability Pride Month and the theme for this episode is independence. According to the W.H.O./the World Health Organization:"Disability results from the interaction between individuals with a health condition, such as Cerebral Palsy, Down syndrome and Depression with personal and environmental factors, including negative attitudes, inaccessible transportation, and public buildings and limited social support. A person's environment has a huge effect on the experience and extent of Disability. Inaccessible environments create barriers that often hinder the full and effective participation of persons with Disability in society on an equal basis with others. Progress on improving social participation can be made by addressing these barriers." And I know that for most of us, most of our listeners, this might be a totally new way of looking at Disability. The idea that health conditions are not the Disability, but it's the way society accommodates, responds to and labels those health conditions that is the problem, is a really interesting way to look at it. These responses, labels and lack of accommodations are the causes of any Disability we experience in life. These are the things that impact and limit our ability to live independent lives. The stories you'll hear in this episode give very different reflections on what it means to be independent. Host Kaye Love chats with Tanya Winter and Kamand Alaghehband about their stories"Pediacrisis" and“Kamand's View: No More Prejudice." These two wonderful women talk about the way they navigate the predictable and the unpredictable barriers they meet day to day. A team of Disability Advocates creates True Tales to give voice to the personal stories and lived experiences of disabled storytellers. We offer a unique and often underrepresented perspective to the growing community of podcasts listeners worldwide. Because here at Art Spark Texas, we believe that everyone's life is enriched by the inclusion of multiple voices, we have been training Disability Advocates as storytellers for over 20 years. We acknowledge and thank the Disability Rights Advocates whose courage laid the groundwork for the ADA and the independence that many of us enjoy today. And we are proud to bring you stories that build upon their legacy. We offer you this episode as a celebration of Disability Pride and hope your day is enriched from listening to"Independence" by True Tales by Disability Advocates.

Kaye: 4:00

Welcome to the podcast where we change the world. One story at a time I'm Kaye Love and I'm your host. Our guests this week are Tanya and Kamand, who will tell stories of their pursuit of independence. Our storyteller, Tanya Winter is here to share her story"Pediacrisis", which she wrote and performed when she was a member of the Actual Lives Austin troop. Opening Minds, Opening Doors was an offshoot of Actual Lives Austin. First, tell us a little bit about your history of advocacy, including your involvement in Actual Lives Austin.

Tanya: 4:39

Okay! Well, I always tell people that I became an Advocate when I was 28. I've had my Disability all my life, but there was definitely a moment when I was 28 that I can actually pinpoint back to. Back then I actually took an advocacy training called"Partners in Policy Making," and it was the first day and they had us Umm, introduce ourselves with microphones. So the microphone comes to me and I sit back in my chair and I just had this epiphany moment. I was like,"Holy crap! Disability is a culture. Look at all these people. And I'm part of this culture. I can't believe it." And it really kind of just put this passion inside of me. So I finished the course and, um, just basically jumped right into advocacy right off the bat. The first thing to do is to get involved in your community. So I started with the Mayor's Committee for People with Disabilities, where I remained a commissioner for 10 years. And then I also had a couple of jobs where I was really doing a lot of public speaking and training other Advocates with disabilities. So it just kind of snowballed from there. You know, you get to know somebody who gets to know somebody else who's working on a project and you just kind of go

Kaye: 6:05

Nice, that sounds like you've had some really good experiences with advocacy. Thank you for sharing those now. Let's hear your story.

MsBoye: 6:27

This is"Pediacrisis" written and performed by dancer, Tanya Winter.

Tanya: 6:37

Have you ever had one of those moments where you're so embarrassed or uncomfortable that you actually could see yourself running away screaming? One of those moments you'd rather forget. Yeah, me too. Can I tell you about it? Okay. About a month or two ago, I decided to get a pedicure. Now I'm a girly-girl, but you would never know it. I almost never wear makeup. I value my sleep too much. This pedicure was a necessity, it happens when your muscles are so tight that you can't reach your toes to cut your nails. I walk in and immediately a short Vietnamese woman, my height, imagine that, is pulling me by the arm. I felt violated right off the bat."You want manicure or Pedicure?" She said, in that broken-English-as-a-second-language kind of way."Both." I responded, while trying to get her death grip off my arm. Suddenly I look up and Mount Everest has sprung out of the floor. Okay, okay, it wasn't Mount Everest it was one of those pedicure chairs, you know the ones, with the built-in massage, on the blocks? I was horrified."How in the world am I going to get up there?" I asked myself. My inner child responded in a typical way, with a very enthusiastic,"You can do anything you put your mind to." I let the fire in my belly, hurl me into the chair."My name, Anne," the woman said,"You live with your Mom and Dad?" As she pulls off my shoes without asking. Why did I have to wear my Docs today?"No, I live in my own place. That's my car out there." Oh, you live by your self?" As she starts the water and clips, my nails,"How? You need help." Anne added."I'm fine. I have my own job." I boldly stated, trying to keep in mind her culture. She was raised by her family. Sick children, like me had to be taken care of. She was a well-intended-ignorant. Is it even worth the energy getting pissed that she doesn't know I can take care of myself? I'm a tax paying citizen for Christ sake. How do you begin to explain the idea of independence to someone whose self image is dictated by her family values? Before I can begin to try, Anne was putting those ridiculous paper flip-flops on my pretty toes. I can't walk in those!" I thought, as I was faced with the task of getting down off of Mount Everest. I was horrified as Anne swung my, my feet out of the tub of water. I could feel my butt slip, visions of"Lifeline" commercials danced in my head. But before I could say,"I've fallen and I can't get up," I could feel my butt scrape along the side of the mountain as my flip-flop fell off my foot. Anne watched my almost fall, she had lawsuit written all over her face. All that was left to do was pay. I handed Anne my check card. A$6 tip should be enough to end this embarrassment. I filled in the receipt and made a move for the door. As I do Anne protests,"You tip me. You can't, you have no money." I just took a deep breath and she took my six bucks.

Kaye: 10:35

Thanks for sharing your story with us today. This story illustrates the misconceptions that people with disabilities deal with. What would you hope for people who work in occupations that serve the public to take with them today?

Tanya: 10:48

Well, my advice to them would be to really try and listen. You know, I think everybody is in such a rush these days, that they just forget to actually listen to what a person is saying. So I would say listening is the first key. Secondly, you know, ask questions. If, if you, you know, all of us have had those moments where we, we think to ourselves, gosh, I'm not familiar with this situation right now. And so it's really important to just ask questions. You know, she could have said,"Can I help you?" You know,"I'm going to grab your arm now." But there was none of that. There was just this yanking that I think part of it was I think like, just cause you know, everybody's busy. She wants to get me in the chair, get started. I understand that. But if she would've just asked more questions, it would have been an easier, um, experience.

Kaye: 11:49

That sounds like good advice, listening, asking questions and it sounds like too asking for permission.

Tanya: 11:55

Yes.

Kaye: 11:56

You also mentioned the decision not to waste your energy by getting upset. What can you share about that skill to assist others with disabilities who are learning to navigate the emotions that arise when dealing with this kind of frustration?

Tanya: 12:12

I would say always take a deep breath first, before, you know, really, really reflect on your thoughts before you open your mouth to speak. And just like you hope that people listen to you and ask you questions. You need to do the same. You know, uh, you need to make sure you're listening and you also should be asking questions to that person. And I always think that you should really, you know, as people with disabilities, we're always telling people,"You don't know what disability is like until you have one." And so we need to do the same to all people and try to put ourselves in their shoes and try to imagine um, how they're feeling and, and the questions that they would like you to ask and just how, just how, how they're feeling.

Kaye: 13:11

That's great advice. It's great chatting with you, Tanya. I'm so thankful you were able to come and share your experience with our audience. Tanya is excited about upcoming performances with Art Spark Texas Dance, which will be posted to Art Spark tx.org when information becomes available. Thanks again to Tanya. Now stay tuned for the second part of our show where we will hear from Kamand. Welcome back, we are here with Kamand Alaghehband, who will be sharing her story,"Kamand's View, No More Prejudice." Kamand, tell us a little bit about how you became involved in Opening Minds Opening Doors.

Kamand: 14:09

I was involved since 2015. Back then they called it VSA, which stands for Very Special Art I got introduced to Very Special Art Organization, since I was always struggling with writing, I decided to attend Opening Minds, Opening Doors, writing classes. All of my academic life at school, I was hesitating to write. I was so afraid of people judgments and what they've been thinking of me. Writing classes was coming with butterfly in my stomach."What if I don't fit to this society? Or people think I am weird?" This always prevented me to write and improve myself, until I met ERIC CLOW the instructor and founder of Opening Doors, Opening Minds. I never forget my first class with him. He was very calm and very skillful with us. I remember our first writing assignment was"All you have to do is listen to the outside world sounds and write about what you hear and what it means to you." He said, there will be no critics about your writing. We would not judge what you write or how long you write about it. That was the beginning of my writing involvement. And since then I've been taking nonstop writing classes through Art Spark Texas. I owe the organization, all of my writing skills because of the, kind of the freedom they gave me not to be afraid of writing and get judged. I am where I am because of them. Thank you Art Spark, Texas.

Kaye: 16:19

Great! Now, please share your story with us.

MsBoye: 16:29

This is"Kamand's View: No More Prejudice" written and performed by Kamand Alaghehband.

Kamand: 16:41

Okay. I am myself. I am me. I am Kamand. I feel proud of myself for who I am. My wish allows me to travel to see my family and sit in a big group of aunts, uncles, cousins, and grandparents. I love my family. My grandparents are sweet, like a big box of chocolates. Sometimes when I visit them, I get a sugar rush. My big wish is to graduate from"nonPareil." I want to be a cartoon animator and work for Disney company. I want to be a college professor at UT teaching science and become a guest speaker. I want to speak in front of a million people about how to communicate my wants and needs. I would like to travel around the world first class. I will offer free education to the people around the world about common ground so there'll be no more prejudice. I have two pictures taken of me in 2015. In the first I'm holding a sign that says,"My dream is one day to be..." In the second picture my sign says,"...to be me and show the world who I am." Every time I look at these pictures, it gives me a great joy and a sense of pride. All my life I've been a pleaser, I always try to make other people feel happy. I've been a public speaker to raise money for many organizations. I am proud to tell my story. I've been volunteering at Dell children's hospital since the age of 13, up until 12th grade. After that I've been volunteering off and on for different organizations, such as Hospice, Special Olympics and nonPareil. When I help others, it gives a great joy into my heart. All my life I always felt loving people, no matter their age, gender, religion, or race. Having a gift of loving everyone brought so much joy to my life and I am inviting you all to unify with me, to educate others, to love each other. The more we love, the less we will see each other differences. Together we can overcome prejudice. Thank you for listening.

Kaye: 19:42

Welcome back. I'm here with Kamand. Thanks for sharing your story with us today. You talk about how your volunteer work gives you great joy. What are some of the things you have done as a volunteer?

Kamand: 19:54

I volunteered at Special Olympics, Texas by reciting Athletes Oath at competitions. I also presented speeches to various vendors and facilitated fundraising and recruitment of volunteers and donors. I volunteered at Dell Children's Hospital since I was 13 years old, up to 12th grade. I was helping their gift shop, hematology clinic, sanitized, and maintain cleanliness of children's play area, engaged children in arts and crafts and assisted in patient transportation section. I conducted office and organization work at Hospice Compassus and I volunteered at the Seton Medical Center in Round Rock for years.

Kaye: 20:47

Wow, that sounds like you've done some really great work and some important things. What is your advice for other people with disabilities who would like to get involved with volunteering? Don't underestimate yourself with your abilities of what you can and cannot do. If you desire to volunteer at any organization, just do what you can and enjoy every moment of it. You're volunteering work, no matter how small it is, will be appreciated. And I guarantee you, it will bring a huge joy to your life. It was great chatting with you today Kamand.

Kamand: 21:27

Cool, thank you. Thank you Art Spark Texas.

Kaye: 21:33

This show was produced by Brittany Sessum. Special, thanks to MsBoye and Brittany Sessum for editing and mixing. I also want to give a special thanks to Tanya Winter and Kamand Alaghehband for taking time out of their schedules to be with us today.

MsBoye: 21:52

Did you know, you can help us with our mission by sharing this episode with your friends, rating the show while leaving us a review. We'd love to hear from you on our True Tales podcast, Facebook page. And of course, don't forget to follow Art Spark Texas on TikTok, Instagram, and Twitter. And this Disability Pride Month and all year round, remember what Meryl Streep said?"What makes you different or weird, that's your strength." So until next time, which will be our final episode of this season, be proud of your uniqueness and be kind to yourselves and others..

Kristen: 22:41

All episodes of the True Tales by Disability Advocates are free on Apple Podcasts, Spotify, and anywhere you get your podcasts. This 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 more about The Speaking Advocates Program, sign up for our newsletter at ArtSparkTexas dot org. That's A.R.T.S.P.A.R.K.T.X. dot O.R.G. This free virtual training program is open to people of all disabilities, no matter where you live.