March 15, 2022
Amplify Inclusion Podcast
Welcome to Amplify Inclusion, a podcast where we share authentic stories of inclusion in action.
Diana Pastora Carson, Founder of Beyond Awareness, shares her family’s story and her mission to move communities beyond awareness and toward diversity appreciation. Listen now or view the full transcript below.
This episode was co-produced and engineered by Subframe Sound with music courtesy of Nealle DiPaolo. This season is made possible thanks to generous support from the Fred J. Brunner Foundation and members of the Aspire community.
Welcome to Amplify Inclusion. I’m Clare from the nonprofit, Aspire. Thanks for joining us for stories and conversation about disability inclusion. Today, my guest is Diana Pastora Carson, founder of Beyond Awareness based in California. Diana is an educator, consultant, speaker, author, and podcaster. She supports educators, families, and communities to go beyond disability awareness and work toward diversity appreciation. Although Diana does identify as a person with a disability, she credits her brother Joaquin for her commitment to disability inclusion, advocacy, and activism. Diana and I recently spoke about her family’s story and her ongoing work. Here’s our conversation. Diana, thank you for being with me.
Thank you so much, Clare, for having me on.
I’ve loved exploring all the resources on your site, beyond awareness, and all the great new things you’re putting out, you know, your new podcast series that you’ve launched the TED talk that you presented, which was where I really got to know your story and the story of your brother Joaquin, which I want to talk more about today. So I want to start just by hearing what you’re involved in right now. And that will hopefully help our listeners understand your role in the focus of your work.
So for the past 30 years or so, I’ve been an educator in public education, both in the elementary level, and in special education and general education. And also, I’ve lectured on the topic of disability and society both at the community college level and at San Diego State University. I’m a public speaker. I’m a community activist. I serve on
the Board of Disability Voices United and I served two terms on the board of Disability Rights California. I’ve written a book for educators called Beyond Awareness, Bringing Disability into Diversity Work in K-12 Schools and Communities. I also have written a children’s book called Ed Roberts, Champion of Disability Rights, because I saw that there was a need for kids to know about disability history. And there weren’t any resources out there that were respectful and in alignment with disability studies. And so now, as you said, I have a podcast called Beyond Awareness, Disability Awareness that Matters. I’m excited about that. And we talk about disability awareness from not from what we need to do to fix people, but what we need to do to fix barriers in society. So that’s kind of what I’m up to right now.
I love hearing how, as you saw different needs in the community, your professional journey has really evolved and taken shape, the way I understand it, there’s a lot of sort of interweaving of your disability journey between yourself, your family, your personal life, your professional life in a really powerful way that I think is so important, and connects with so many people. So let’s talk a little bit more about some of those moving pieces. And I’ll let you kind of start- what comes up for you first, when you think of your journey?
You know, the first thing I always say before I share this journey, because it involves my brother, and because I love and respect my brother, I always want to make sure the audience knows that my brother, Joaquin, has given me his consent and his blessing to share our journey together towards inclusion. And it’s really important that people understand that. So I wouldn’t want to be sharing his personal life without his permission.
You do always take a moment to be really intentional about Joaquin’s perspective and making sure that others know that he has given his consent. And I know he often contributes and participates and is present a lot of times when you’re sharing your family’s story. And I just think that’s such an important message and such a teachable moment for all people to be reminded that even if someone doesn’t use verbal communication or has limited use of verbal communication, it doesn’t give anyone the right to be their voice for them or speak on their behalf.
Right. And I have been conscientious about ensuring that he’s the captain of his ship now. And he does want people to know this journey, and he trusts me to share it with others. And I don’t take that for granted. So where it starts, I just have to go back to our elementary school days where it starts is in 1975 there was this new law that was passed that said all little boys and girls could go to school, whether they had a disability or not. That was IDEA, The Individuals with Disabilities Education Act, also known as PL94-142. And so Joaquin, my brother, who was probably five or six at the time, had never gone to school. And I was so excited as his big sister, I was six or seven years old. And I was so absolutely beyond thrilled that my brother would get to go to school, that I get to see him at school that I get to introduce him to my friends, and he’d get to meet my friends. And when I got to school, his first day of school, he took the yellow bus to school, and I walked to school like a normally did. And when I got there, I saw him behind a fence, and I walked to my classroom, and I couldn’t wait for recess to start. And when the recess bell rang, I ran to his class, like, I just wanted to take him out to play. And I got there and I was stopped by that big metal fence. And on the other side of that fence, stood my brother and a teacher. And the teacher was holding his hand kind of in a way to keep him away from me because he was excited to see me as well. And I said to her, “Hi, I’m here to take Joaquin out to play at recess.” And she said, “I’m sorry, you can’t take him out to your playground.” And I said, “Oh, well, can me and my friends come in and play with him in there?” And she said, “No, I’m sorry, you can’t do that, either. He belongs here, and you belong there.” And that was my first experience of an ableist mindset. And you know, the result of an ableist system when the word ableism wasn’t even really a word at the time. But that was the first time I realized that my brother was not seen in the same way that we saw him at home. And, you know, later in life, I realized that IDEA legislation it ensured that my brother had a legal right to an education in the least restrictive environment, and a free and appropriate education, as determined by the people in control. But it didn’t ensure that he would have that right protected. And it didn’t ensure that he would be included and loved. And he ultimately ended up being sent to a non-public school where not only was he segregated, but he was also virtually tortured. The aversive conditioning methods that they use to keep him under “control,” were dehumanizing. And he was ultimately after 10 years there, and after they insisted that once they couldn’t control him anymore, they insisted that he be put on psychotropic medications, which our family did not want for him. But it came to a point where my parents were given an ultimatum and told that if he did not take those medications, that he would be expelled from the school and that there was nowhere else for him to go except an institution. And so, my parents relented, and Joaquin ended
up having severe side effects to those medications and ended up ultimately being institutionalized not once, but twice in his life thereafter, for a total of 15 years. So, as I became older, and I started to think about what I wanted to do as a career, I kept thinking, Why did this have to happen to Joaquin? Why did he have to be institutionalized? Why did he have to be treated so differently? It wasn’t? Why was he born with autism? But why did society not see him as whole and valuable as he was? And why did the education system and why did society discriminate against him? And why was- why was it also unjust? So as an adult, I went into the field of education, and I taught special education, and then general education with an emphasis on inclusion. And I didn’t have the answer to why. But later on, I was asked to teach a disability studies course at a community college. And you know, having a master’s in special education, I knew a lot about disabilities, right? But I didn’t know a lot about the experience of being disabled by societal barriers. So even in my ignorance, I knew that I was ignorant. I knew that I needed to do a lot of learning before I could respectfully teach a course about disability and society. And so I started doing research and I started reading and listening and going to conferences. And that’s when I actually started realizing that what Joaquin had endured was a result of a medical model mindset that people had, that he was damaged, he was defective, that he needed to be fixed, and that he would not belong until he became like everybody else who was “normal.” And that’s also when I started recognizing that disability awareness that I had been taught and that so many educators had been taught was actually founded in a medical model perspective, as well. And even though our intentions were to educate the community, this intention was backfiring. And I think it coincided with my desire to get Joaquin out of an institution, giving me clarity and appreciation, and a deeper commitment to see inclusion and justice for Joaquin. The clarity that Joaquin was not the problem; that we were the problem; that we the system, the education system, the the social support systems in our state, our family, and me included- we had failed to learn Joaquin’s language, we had failed to listen, we had failed to honor his needs and wishes and failed to provide appropriate supports in his life. And that acknowledgement, although it hurt, it deepened my commitment to bring him home for good from the institution and to provide a life of quality in the community. Sorry, I get a little bit choked up every time. Dang it!
That’s okay. It’s real. It’s real, you know? Take your time.
Yeah. So that’s how my career and my focus in my career and my work interweaves with my personal journey with Joaquin. It’s all about valuing each person. It’s really the bottom line is love. You know, there’s that hashtag. I think Alice Wong was the first one to use it: access is love. Joaquin didn’t have access. He, there was no love in that legislation that said he could go to school.
And so, it’s bringing in that love and that access component to his life and to the lives of everybody.
It speaks to how it really is a, oftentimes a whole family experience. When one individual is being excluded and dehumanized in that way, what a ripple effect it has on siblings, parents, caregivers, entire family networks, and communities. And you know, how you took that clarity to keep moving through that fight and help Joaquin get to a place where he is now where he’s your neighbor in your community.
Yes, yes, he is. He is so- and his life is so transformed, I can tell you endless stories about how his life has transformed. You know, he went from having no education, Joaquin, never got to learn reading, writing, math, social studies and science, to having every opportunity to not only listen to podcasts and watch YouTube videos, but also to attend classes front and center at SDSU, where I teach my class, he also had no reliable means of communication, and nobody who cared what he was communicating. But now that he lives in the community, he is being supported not only to communicate using verbal communication, which sometimes is not reliable, but also knowing that he’s honored for all forms of communication, including the metaphors that he uses. When he spoke about getting out of the institution, his favorite phrase was “steak is coming, steak is coming, steak is coming.” My mom had asked him what do you want your first meal to be? And he had said steak. And ever since that day, he kept saying for three years while we were fighting in our hearing process for three years to get him out of the institution, for those three years he kept saying, “steak is coming, steak is coming.” And so he knows that metaphors are honored, as well. He also has the ability to participate in supported typing and a team that’s committed to providing supported typing
opportunities and training for him and his staff, which has been very freeing for him in moments of crisis. You know, if you’re a man in your 50s, who’s never had people who understood that you were in there and you all you really need is to be acknowledged. And for your communication to be honored. And Joaquin also knows that sometimes when those things aren’t working, when the real- when the communication verbally isn’t reliable, and when the metaphors aren’t working for him, or when there’s when his body is not able to participate in supported typing, he knows that we’ll look to body language, we’ll look to his facial expressions, we’ll look to his behavior to inform how we can best support him and what it is that he is saying to us. And so another thing that he has access to now that he didn’t have access to at the institution was choices. Knowing that he has the freedom to make every single choice is something that is huge, and that most of us take for granted. We really do, you know, from what we get to see in our home, what we get to smell in our home, what we get to listen to in our home, he has control over his own home, he lives a self-determined life now that he didn’t have the opportunity to live when he was in an institution. And then I’ll end with just the total dignity piece. He has dignity, front and center. He’s spoken to with respect, in general, he just knows he’s loved here.
It’s really powerful to hear the list of ways that his life, your life, your family’s life have changed so drastically. And I’m sure that’s just scratching the surface, right?
Yes, our family’s quality of life. Before if I wanted him to come home for a home visit, I would have to drive there 2,3,4 hours, pick him up, drive back 2,3,4 hours, have him be at home and enjoy a few hours, it was very hard on my parents who were older and in not in the best health to do that. And it was hard on me who, you know, I was working full time to try to afford to buy a home that had a place that Joaquin would be happy and well in, which is ultimately what we did. We bought a home on eight acres that had a barn that we could convert into an apartment for Joaquin, and to have it be something that worked for him a durable environment that he felt safe in.
And I want to come back to that word ‘durable’ in a moment, because I know that’s important to another piece of this conversation. But I think you know, it’s important for us to mention, Diana, because I know you’re well-aware of this, you know, the deinstitutionalization movement was really important in a lot of ways. But there’s also
another side to it. And looking at the fact that there was a lot not invested at the same time this was happening that caused some harm for folks as well.
And I think it’s important, just to mention kind of both sides of that.
Absolutely. You know, it’s a scary thing for families who’ve had somebody who has been in a secure placement, to see them being forced out of that institutional setting. And I know this is particularly true for elderly parents who are fearful of their safety of their loved one. And I’ve spoken with families who are very upset that their loved ones are being forced out of institutions now. And do you know what? I get it. I do not want institutions. I know the difference. And I know what’s possible. And at the same time, it is so scary because there are not the same resources out in the community. We have not put safeguards in place yet. The silos of agencies that need to be communicating and ensuring that we have access to everything that we need, once we’re out of institutions. The communication is just not there- yet.
Yeah. And that’s, I think, a reoccurring issue, that we may make movement in one area or breaking down dismantling, you know, oppressive systems, but then we don’t always balance that with the resources needed to counteract some of the harm that’s done as a result.
So, let’s come back to durable because that word stood out to me. I know it’s important to you for a specific reason. So, tell me more about your push for what you’re referring to as durable accommodations in our communities.
Yeah, so I, you know, when we got walking out, we knew that we had to build him an environment that was durable, so that he would be safe, so that he would feel at home. So, we had to create a space that had windows that were shatterproof. We had to create a space that was sanitizable. So, we had to make sure that we had a space that would be safe for him when his body is not in control. His cabinets, his refrigerator, appliances, everything needed to be bolted down, so that it could not hurt him if he were having a crisis. And so that’s what we created for him. Now go back two years ago, almost to 2020, when we had to evacuate from wildfires twice- we had no place to go, that was durable, no place to go that was similar in design to what we had designed for Joaquin. We call his home ‘Joaquin-ified,’ we don’t expect every public place to be Joaquin-ified. However, to have access in a hotel, to one room that is created and designed in a durable way would have been really great. It was a terrifying experience to see flames at the end of our driveway, and know that we had to leave right now, and hope and pray that Joaquin could be in control of his body during this emergency. There was no place that would open their doors for him to be safe during emergency situations. So my- my push, as you said, my goal is to network with people who can support the idea of establishing guidelines for the hotel industry, possibly an addendum to the ADA, to include durable accommodations within accessible public accommodations. So that at least in emergencies, people like my brother have a place to go.
It makes a lot of sense. I think it really speaks to safety and the right to safety. So I’m glad to hear yes, you’re passionate about trying to build some support around that idea. And I’m excited to hear updates on what’s happening. So, one thing that we have in common is that we both are educators at heart, you know, our past experiences in education. And essentially, we’re both passionate as educators about getting kids involved in the disability inclusion conversation. So tell me your thoughts on that.
I think it’s critical. If we actually want to see change. If we want Disability Rights to turn into Disability Access and Disability Justice, then we need to do something different than what we’ve always done. And so, at the core of my work is bringing disability studies and education to educators and to administrators and to students. Because these students who are in school now are going to be the educators and administrators of the future. They are going to be the health care professionals, the law enforcement officers, Parks and Recreation planners, they’re going to be clergy, they’re going to be
business owners, they’re going to be media people, and employers and landlords, they’re going to be the community that we need to have a more inclusive mindset, to have an understanding of the positive impact of inclusion. And to be committed to it because they already know that it’s valuable because it was valuable in their childhood.
Every time I talked to you, I learned a little bit more about your story and about you and Joaquin and I so appreciate your vulnerability. Every time you’re sharing some of these difficult moments. I understand. It’s like reliving a lot of trauma for you and your family. And I know that’s a lot to put on yourself. And you’re doing that to really make change. And I thank you for sharing your story with us today.
Thank you so much for letting Joaquin and my story be out there for your listeners.
Thank you to my guest Diana and her brother Joaquin. Check out the links in the episode description to learn more about Beyond Awareness. Join us next time for my conversation with Commissioner Rachel Arfa of the Chicago Mayor’s Office for People with Disabilities. Until then, stay connected with us at AspireChicago.com and be a part of the inclusive movement by rating and subscribing to Amplify Inclusion. This episode was co-produced and engineered by Subframe Sound. This season is made possible thanks to generous support from the Fred J. Brunner Foundation and members of the Aspire community.
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