Speaker 1 (00:13):
Latin pop music...
Diana Pastora Carson (00:15):
Welcome to the Beyond Awareness: Disability Awareness That Matters podcast. Here, you will find a safe space to learn and grow with leaders in education, Disability Studies, disability, advocacy, and diversity, equity and inclusion conversations. Specifically, we look at how disability fits into diversity, equity and inclusion, and how to frame disability awareness. In the context of educating K through 12 communities, this podcast serves educators, parents, and community members who strive to learn and or teach about disability in a research-based and respectful way. Moving beyond simple awareness and diving into inclusive and socially responsive conversations. Thank you for joining us today. Now let's go Beyond Awareness.
Diana Pastora Carson (01:10):
Hello everyone. My name is Diana Pastora. Carson. Welcome. Welcome. Welcome. I am so happy you're here. The fact that you're here tells me that we have some things in common. You're either an educator administrator, parent family member, community member, or just someone who's really interested in learning about disability in a social justice context or diversity equity and inclusion context. And if that's the case, then you are my people and this podcast is for you.
Diana Pastora Carson (01:45):
So who am I? And why am I doing this podcast? I've been an elementary educator for over 30 years, six years, were as a teacher's aide in a special education classroom and 25 years as a credentialed teacher, some of those years teaching were as a special education teacher, and most of them were as a gen ed teacher with an emphasis on full inclusion of my students with disabilities. I recently retired from teaching elementary school due to some disabilities that I myself experience this, although initially devastating and I mean devastating for me and something for which I experienced a lot of guilt for having left my amazing grade level team, my amazingly supportive administration, and my precious students and their families during a pandemic of all times, a time when they most needed me, needless to say, I was a mess. But I've learned, I have processed that grief and guilt and I focused on the silver linings.
Diana Pastora Carson (02:55):
I've discovered silver linings and focused on them. This pause in my life really empowered me and opened up some doors for me, such as creating this podcast and sharing the beyond awareness message with a wider community.
Diana Pastora Carson (03:12):
Over the past 20 years, I've also taught disability studies courses in both community colleges and now at San Diego State University. And with more flexibility in higher education and with a co-taught classroom arrangement, I have been able to continue teaching a Disability & Society class at SDSU. It's something I'm really grateful for. I'm also an author of several books, most notably Beyond Awareness: Bringing Disability into Diversity Work in K-12 Schools & Communities, as well as my children's book, Ed Roberts: Champion of Disability Rights. I'm also a public speaker and a consultant.
Diana Pastora Carson (03:52):
And what I really want you to know is I'm a proud and fierce sibling advocate. On this podcast, I'm going to share a lot about my brother, Joaquin, throughout the episodes. And I want you to know, and it's super important that you hear this, and that you know this. Know that I have Joaquin's consent and his blessing to share our journey publicly. He wants me to share. He wants people to understand the value of everyone and the importance of access to creative support and community inclusion. Joaquin has expressed this approval through his nonverbal communications, his body language, his "right on, baby!" and "I love you" responses when he hears me share our journey in classes and conferences, and also through supported typing. His consent means the world to me. And I thank you, Joaquin. I know you're listening. I thank you for the privilege and the honor to share our lives with the community, for the betterment and dignity of so many lives. I love you, Joaquin.
Diana Pastora Carson (05:02):
My brother, Joaquin, was tragically institutionalized for a total of 15 years of his life. Our family traveled two to three hours each way, every weekend, to visit him and take him out during all those years. And we visualized and prayed for his return home. And ultimately we had to fight in court for three years to get him out of the institution. And as of November 4th, 2021, it's been 10 years since he has been out of that institute...out of that institution, don't even know how to say the word it's so offensive to me. But yeah, he's been out of there for 10 years, 10 years in a customized home that meets his behavioral needs and in a rural community that embraces him and supports his unique way of being in the world. This podcast is dedicated to Joaquin and to his freedom and to all the other Joaquin's out there in the world.
Diana Pastora Carson (06:04):
This podcast is a celebration of his ten-year anniversary and proving that anything is possible when hearts are committed, Joaquin's case is considered high profile in California. He has a smile that melts hearts, and he also has support needs that can be intense. They said he couldn't live in his own home. They said he was a danger to himself and others. They said we were setting him up for failure, but they were wrong. Joaquin now lives a self-determined life with a team of people who we call "Joaquinologists." Their sole job is to provide behavior and communication support and health support and overall life quality assurance with and for Joaquin. Although now his life is one of self-determination and purpose and belonging, he still deals with the residual effects of decades of isolation and a dehumanizing existence that he endured both at the institution, as well as in a segregated school, during his childhood and adolescence. We do have good days and we do have bad days, but they're all day's worth the energy and creative efforts that Joaquin has invested in his great life. And that Team Joaquin has invested in his great life, that our family has invested in his great life.
Diana Pastora Carson (07:25):
Joaquin is my WHY. He is the reason I am passionate about doing disability awareness and the reason that I preach that we need to do it in a different way than we traditionally have been doing it. I understand the difference it makes when people are simply seen versus seen and heard and honored. I understand the difference between studying and knowing about people with disabilities versus getting to know people, loving them and empowering and amplifying their voice and advocating for their access to all things that support their life quality. That's why I understand the difference between our outdated ways of doing disability awareness and research-based ways that I want us all to be aware of, learn about, and put into practice.
Diana Pastora Carson (08:17):
So I want to jump back to how this Beyond Awareness understanding or epiphany happened for me back in the day. About 20 years ago, I followed in the footsteps of my mentors who conducted disability awareness activities in their schools or classrooms, just like I'm sure many of my listeners have done the same thing. I did the simulation activities where students would wear blindfolds to pretend they were blind, or they'd use a wheelchair to know what it feels like to have a mobility disability. I used the inspirational videos to show students how inspiring people with disabilities are and that we should love them and be nice to them, even if we did it out of pity. So anyway, I did these activities with a big heart and great intentions. I did this for years and I was honored for it by my administrators, my colleagues, my families. It felt really good to get that recognition. It felt really good to do something that I thought was going to make a difference. But then I got an additional part-time job teaching a disability studies course at a local community college.
Diana Pastora Carson (09:30):
Although I had a master's degree in special education, and I knew a lot about disabilitIES, I did not know a lot about disabilitY. I knew that I needed to dive in and learn more. I needed to do research before I could teach the course with integrity. And so I did, I dove in and when I did, I had such an awakening. What I learned up ended my old understandings. It was then that my three worlds collided. My life has a sibling who found myself always needing to advocate for my brother, my life as an elementary educator, constantly having to prove that inclusion is a good thing, and it can work in my life as a college instructor teaching about the disability experience in the context of disability research, suddenly everything started to make sense to me. I learned about ableism access, assistive technology, disability, history, disability, rights, disability, justice, and so many other concepts I'd never heard of. And I was able to apply those concepts to Joaquin's life experience, as well as my experiences as an inclusive educator. I finally understood why Joaquin was excluded and why he was institutionalized, and why our family and friends were put in that advocacy role time and time again. I finally understood why administrators and teachers and parents resisted efforts toward inclusion and why my inclusion work seemed to be in vain.
Diana Pastora Carson (11:08):
As I said, it all started to make sense. So that's the good news. The bad news was (well, it felt bad at the time, but it turned out to be good news), but the bad news was that given my new understanding, I also had a new realization that all the things I was doing for my disability awareness endeavors were counter productive. They were not helping to change hearts in my community. They were not making strides in eliminating barriers to access, creating consciousness around access or opening doors to inclusion, true inclusion. They were simply perpetuating more of the same ableist attitudes and policies. That's when I decided to go Beyond Awareness. I tested out different strategies and focused on research-based content. That truly makes a difference. I practiced at my school and I believe over the years, and I'm told by others that my efforts truly did make a difference in our school culture. Then I wrote a book about it. I created resources and a digital course about it, and now a podcast. So that is the story behind Beyond Awareness and this podcast.
Diana Pastora Carson (12:25):
One of my main takeaways from my research is that disability awareness must be guided by the voices of people with disabilities. "Nothing About us without us" is an important message of the disability rights movement. And it will be the HOW of this podcast. So Joaquin is my WHY. And the voices of people with disabilities will be the HOW. My goal is to bring on a diverse lineup of guests who understand firsthand what is necessary to not just create awareness of disabilitIES, but to create awareness of disabilitY, or in other words, awareness of the ableism that disables people. To create awareness of societal barriers that come in the form of attitudes and practices and policies. To share people's stories of creative and flexible support, their commitment to access and inclusion, and to embracing diversity at its fullest, and to successful communities where all people belong.
Diana Pastora Carson (13:36):
So if Joaquin is my WHY, and my guests are my HOW, then where do you fit in? Well, you are my WHO. You are the one who makes this story worth sharing. You are the one whose heart gets it. You are the one who believes in inclusion. You are the one who stands up for the rights and life quality of your kiddos. You are the one who wants to get it right when it comes to disability awareness. You are the one who deserves to have the right information, easily at your fingertips, to empower your critical work. You are the one who carries the torch in your school or your community, lighting the way for diversity appreciation, equity and inclusion. You are my WHO, my friend, my peer, my colleague, my mentor, my hero. I appreciate you. And I believe in you, let's take this Beyond Awareness.
Diana Pastora Carson (14:49):
Thank you for tuning into this episode of Beyond Awareness, Disability Awareness That Matters. If this was helpful to you, be sure to subscribe, rate and review this show on Apple Podcasts, Google Podcasts, or Spotify. You can also follow me Diana on Instagram @dianapastoracarson and on Facebook at www.Facebook.com/GoBeyondAwareness. Or you can go to my website for more information at www.DianaPastoraCarson.com. My books include Beyond Awareness: Bringing Disability into Diversity Work in K-12 Schools and Communities, as well as my children's book, Ed Roberts: Champion of Disability Rights. They can both be found on Amazon. For your free Beyond Awareness resource called the "5 Keys to Going Beyond Awareness," simply go to www.GoBeyondAwareness.com/keys. This podcast transcription and podcast guest information can be found in the show notes. Intro and outro music has been provided courtesy of Emmanuel Castro. Thank you again for joining me. Be well, be a lifelong learner and let's be inclusive. See you next time.
Diana Pastora Carson (15:42):
Latin pop music...
