This episode is proudly sponsored by Ability Magazine, the leading magazine for health, disability, and human potential that strives to shatter myths and stereotypes that surround disabilities.
Whoa, whoa, whoa.
Welcome to the Beyond Awareness Disability Awareness That Matters podcast. I'm your host, Diana Pastora Carson. Here you'll 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, inclusion, access and belonging, and how to frame disability awareness in the context of educating K through 12 communities. This show 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. Now let's go beyond awareness.
Hello, my friends. Today. This 10 minute episode of Beyond Awareness Disability Awareness That Matters is a recording of an article I wrote a few years ago and it was in honor of the 10-year anniversary of my brother Joaquin, getting out of the institution. For those who do not know, Joaquin is a sweet, middle-aged man who is autistic and who has lived through torturous societal responses to his disability. As a sister, it angers me to think back on all the missed opportunities for the world to demonstrate respect and love for him, and to provide access to communication curriculum relat and long-term life quality.
As an educator, it has driven me to advocate for my students and to realign any efforts toward disability awareness within a social justice framework, which is what this podcast is all about. As we are now nearing the 13th anniversary of Joaquin's homecoming and healing journey from the hurts of the past, I wanted to share this article with you. As a reminder, whether you are an educator or a family member or a community member, if you are gonna help make the world a better place, you need to be in touch with your why. I've said it many times before. Your why is so important. What is the purpose of your disability awareness endeavors? Why does inclusion matter? What is your why? And if you don't have one, please feel free to borrow mine, which you will soon learn after you listen to this episode. Your why will determine your how and how you focus your disability awareness work matters greatly.
This article, Almost Heaven, was originally published in AwareNow Magazine, issue 18, The Outside Edition. I'll include the link to this extraordinary magazine in the show notes. I hope you enjoy this episode and I hope you'll share it widely, but mostly I hope it will help to inspire targeted advocacy for more access and more inclusion and belonging in our world.
"Almost Heaven" by Diana Pastora Carson.
John Denver's country Roads may hold deep meaning for many people, but for my brother and me, it symbolizes a childhood bond, the comforts of nature, a triumphant exodus from institutionalization and return to home and family at a time when autism was considered a rare childhood disorder and was thought to be the result of a refrigerator mother, my parents did everything they could to be good parents to Joaquin. There was no internet or Facebook support group to turn to, so they teetered between bewilderment and exhaustion and extraordinary creativity and affection.
For years, mom and dad slept with one eye open, had several varieties of locks on each door of the house that led to the outside world, mortgaged their house to buy him a swimming pool and showered Joaquin with love and laughter due due to public stairs and intolerance, there weren't many places our family could go for entertainment. We sometimes dared to test our luck at McDonald's, Playland, depending on who else was there, we might all enjoy an evening of fine dining, and we always had success throwing on our footy pajamas, throwing our blankets and pillows into the back of our station wagon, and taking dad's homemade buttered popcorn in a brown paper bag to the drive-In movie theater, Joaquin was always down for a ride in the car and for rolling himself up into a tight blanket like a rolled taco.
Although drive-in movies were a close runner up, the all time favorite, the safest bet in entertainment for our family was a drive to the country. Joaquin, who was perpetually wound up and in motion could unwind there. On weekends, we'd drive miles and miles out of our suburban neighborhood and onto winding dirt roads lined with aged oak trees, brush and wild flowers. We'd venture into ranches where barbed wire fences were the only barriers between us and herds of cattle mom packed sandwiches, potato salad, fruit and drinks in a large cooler. We had everything we needed and nowhere else that we had to be. We just let the spirit move us from one spot to the next. We flowed with nature and with Joaquin's bliss. Whatever brought him joy brought us joy on these rural adventures. Joaquin could breathe out all his anxieties founded in the energies of societal, gawkers and judgers, and he could breathe in complete freedom and peace. He could breathe out tornadoes of pent up emotion and breathe in fresh springs of self love. Joaquin could be Joaquin, pure Joaquin energy, one with nature.
People have sometimes asked me if I thought it was the smells or sights or sounds of the country that Joaquin found mesmerizing, and maybe he did love anyone or all of those features, but I think the spatial and personal freedom he experienced there was his almost heaven when out in the country. He wasn't subject to abuse where the sole educational quote unquote educational goal was control on those country roads. Joaquin didn't have to worry about being squirted in the face with a water bottle at school for not being focused on tasks. He didn't have to endure vinegar being squirted into his mouth if he tried to bite in retaliation for their abuse. He didn't have to fight against the timeout room or the physical restraints that turned his bright smile into contorted cries of rage in the country. Joaquin could communicate with the wind and the wind would respond gently, lovingly to his every whim. He could share his babbled stories with the sun and it would warm him with reassurance that he was worthy of that warmth. He could chirp in unison with the birds, spread, open his wings and let his soul soar to a place where he belonged. When Joaquin felt loved, appreciated, and free, he could relax. Everyone in the family could relax
At home. Mom mostly played flamenco records and dad played oldies but goodies from the 1950s. But in elementary school, one of my teachers played the guitar and taught our class to sing country roads. I learned the lyrics in one day and for years. Each night at bedtime, I sang Joaquin to sleep with that song. Fast forward to 17 years old, six feet tall and 200 pounds of rage. Joaquin was forced by his special school to take psychotropic medications to control his behaviors. He had severe allergic reactions to those medications causing extreme aggression and rendering him and our family hostage to assist system not equipped for, nor interested in, humanely supporting behavioral crises. Joaquin was taken to a state institution two hours away from our home where human degradation was also the norm. Our family was devastated and in mourning over this great loss. However, every weekend we took that two hour drive to the institution and back to visit Joaquin and take him out to be with nature. For 15 years, we did this.
We promised Joaquin that we would take him home again, and this time we would protect him. He would never again be subject to restraint, seclusion, and abuse. We would create a place where he belonged, built around his strengths, wants and needs, and we knew it had to be on a country road. After three years in court, we finally won our case. This year marks the 10 year anniversary of Joaquin living in his own home at the end of our beautiful and peaceful dirt road where the breeze embraces his every whim. The sun warms his heart and the birds greet him each morning. Almost heaven.
Whoa. Hello. Hello.
Thank you for tuning into this episode of Beyond Awareness Disability Awareness That Matters. I love providing this podcast to support you in your passionate disability awareness and inclusionary practices work in our schools and communities, and I hope you'll help me to help others by promoting this episode far and wide. You can also proactively support this podcast in the following ways, subscribe, rate, and review this show on Apple Podcast, Google Podcast, Spotify, or wherever you listen to this episode. It really means the world to me to have your support in this way because it increases the chances of others getting to hear the messages presented in each episode. For more valuable resources that align with the values of this podcast, you can visit my website, DianaPastoraCarson.com, where you'll find links to my priceless free resource, how to talk about disability with kids, as well as my blog, where I share my thoughts as an educator and sibling advocate, my flexible online Beyond Awareness Basics course, my books, including the beautifully iIllustrated children's book, Ed Roberts: Champion of Disability Rights, as well as my comprehensive guide for anyone wanting to do disability awareness work.
That is the book entitled Beyond Awareness: Bringing Disability Into Diversity Work in K 12 Schools and Communities. Now, while I love this book so much, and I believe you should have it in your library as a resource, I do understand that time is of the essence, so if you are super busy like me and you just need something quick, easy and convenient, that will get to the point I have just what you need, you should definitely get your hands on my handy tri-fold, laminated Beyond Disability Awareness Educators Guide, published by NPR Inc. Again, all of these resources can be found at dianapastoracarson.com. You can also follow me, Diana, on Instagram at Diana Pastora Carson and at facebook.com/GoBeyondAwareness. Podcast transcription and podcast guest information can be found in the show notes. Intro and outro music has been provided courtesy of my son, Emmanuel Castro. Thank you again. Be well, be a lifelong learner, and let's be inclusive. See you next time.
