Speaker 1:
Diana Pastora Carson:
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.
Diana Pastora Carson:
Hello, beautiful friends, and welcome back to Beyond Awareness, Disability Awareness That Matters. I have missed you so, so much. Happy belated holidays, Happy New Year, and all the gaps that I haven't been able to fill lately. What a chaotic few months it's been. I'm gonna share a personal story, and it may feel like a bit of a meandering monologue before I get to my point, but I want you to know that there's a reason why I'm sharing it with you, and it is related to going beyond awareness. And still, I hesitate to share it only because I don't want it to come off as complaining or attention seeking or, um, self pity. Yes, I have been struggling, and this is a raw and honest observation of my personal experience as a sibling to an extraordinary man who I love like no one else.
Diana Pastora Carson:
It's always my intent to do no harm and to uphold the dignity of others. So please, please listen to the end and do not make assumptions based in pity or based in your own past negative experiences. My expectation is that my listeners will uphold my brother's dignity in their hearts, and please listen to the whole point of this share, which comes at the end as it is important when it comes to disability awareness choices that we make.
Diana Pastora Carson:
So for those of you who do not know yet, my brother Joaquin, who is my sunshine, my spiritual teacher, and my soulmate was institutionalized for a total of 15 years. And after a three year court battle, our family was able to finally bring him home. It's the highlight of our lives. And so for the past 12 years, Joaquin has been my next door neighbor living in his own home on our property, in a barn that has been converted into a home and designed in a way that meets his needs.
Diana Pastora Carson:
He has two to one staffing 24 hours a day, and he has some really extraordinary team members. Um, I mean, I could do a whole podcast episode on each of them. They are amazing, and several of them have been with Joaquin for the entire 12 years, and some have been with him for six or seven or eight years. So this is remarkable, and it's pretty much unheard of in this field that typically has high turnover rates for staffing. So we've had a good run with committed individuals, an elite team, and, and this all in spite of the fact that they get paid only a couple dollars above minimum wage, for the most part, for doing critical support work, including medication management, complete hygiene care, behavior support, community engagement, laundry, housekeeping, meal preparation, and so much more. And by the way, I always must mention that what I share with you, my listeners, is supported by Joaquin.
Diana Pastora Carson:
He gives me his permission and his blessing to share our story. Okay, so back to the story. Well, this past year we've been short staffed. This means that oftentimes team members work alone instead of with another team member. And if Joaquin's having a bad day, it's just not okay for them to be alone. So I cover, uh, and provide support as well. And then we lost one team member this year, um, because she found a better paying job. Who could blame her? Um, and we've had another team member out on medical leave for the past few months. So this means that for many shifts we've had no coverage at all. And when that happens, I am the default person. Not intentionally, but it just so happens, you know, I'm a natural support person in Joaquin's life, and sometimes I cover alone with no backup. So we've been trying to hire another team member, but our posts on social media and ads that are being posted by his supported living agency who I have to give a shout out to LifeWorks is amazing.
Diana Pastora Carson:
None of this is their fault. But none of our posts on social media and ads are bringing us applicants. And this, although it's been slow in the past, to this extent, this has never happened to us. Although we haven't always had the best quality of applicants, we've always had applicants. And come to find out, many, many families and agencies are experiencing the same shortage of direct support providers, direct support workers. It is a crisis that extends across the country. So I'm not experiencing this alone. Now as a loving sibling and advocate who has a very active work life and community involvement life, this reality has hit me hard and it has impacted my work and my productivity and my mental health. I've been the person covering shifts that haven't been able to be covered. My schedule has not been my own.
Diana Pastora Carson:
My life has not been my own. I've had to regularly cancel important work meetings and rely on my coworkers, and I just thank, thank, thank, thank them so much, um, rely on my coworkers to carry a heavier load of the work. And of course, this leaves me feeling bad, which affects my health and my mental health, and I haven't had the ability to move forward with writing and speaking and podcasting projects. Now, don't get me wrong, I love my brother and I love spending time with him. I do. Anybody who knows us will tell you that, but not 12 hours a day, not 12 hours a day when he requires a hundred percent of my attention the entire time. And I have my own life, a job, meetings, oftentimes with coworkers, which I then have to cancel, which affects their plans, my own personal plans, my medical appointments, my to-do list that just gets longer and longer, including scheduling podcast guests and recording and editing podcast for my listeners, and creating the podcast transcript to ensure accessibility, along with my writing and speaking projects, my health, my mental health, to take care of my family, shopping, meal prep, and just me time , even the little things like hello, taking showers, washing my hair, meditation, reading a good book, or relaxing and watching a show on Netflix.
Diana Pastora Carson:
So you get my point. That's enough about me. And who says my brother loves spending 12 hours a day with his sister? Hmm. He gets tired of me too. As much as he loves and appreciates me, I am his big sister. Sometimes he verbally says, "you have to go home now?" which is his way of saying, "you really need to go home". Now, Joaquin feels my energy. He knows I feel disappointment when staff call out sick or I have to cancel my plans to stay with him as much as I try my best to stay positive, but he feels my anxiety when I'm physically with him and stressing out over things I'm unable to do as planned.
Diana Pastora Carson:
So why am I telling you all this? Well, when we talk about disability awareness with a focus on a person's physical or mental or developmental condition and how to fix it, how to fix that condition, how to fix that disability, we are not addressing the real problem. When we begin to understand our role in disabling others, we can begin to empower us all. That's my favorite quote by me . I love that quote. When we begin to understand our role in disabling others, we can begin to empower us all. So this whole staffing shortage crisis that we've been experiencing is not a function of Joaquin's autism. It is a function of societal ableism, societal, disabling of others, societal apathy and lack of commitment to providing access to life quality for all individuals with disabilities and their families and their direct support providers.
Diana Pastora Carson:
The problem is not Joaquin, the problem is not autism. I like to be very clear, especially as a sibling advocate, that I don't blame Joaquin for this. Disability is a part of diversity. I embrace diversity including neurodiversity. My frustration doesn't lie in the fact that Joaquin is disabled. I love and honor him as he is. Of course, you know in parentheses here, of course, any coexisting conditions that bring in pain or discomfort, yes, I'd like for those to be treated as problematic and addressed, of course, because that impacts his life quality. However, my frustration with this lack of access to staffing lies in the fact that we, uh, a people, a society, a government, have allowed wages for direct care staffing to remain stagnant in light of inflation, on top of being insultingly low to begin with, thus pushing individuals and their families into chronic survival mode with, to be honest, very little hope right now for so many of us, the frustration is that there is no equity for Joaquin when his needs are not being met. There is no equity for his family when his needs are not being met. He may be a free man now, no longer living in an institution, but what is his life quality compared to his non-disabled counterparts if his needs are not being met?
Diana Pastora Carson:
When I talk about disability awareness, I always focus on societal responses to disability, not the diagnosis itself. And this is exactly why anything covered in any beyond awareness event or activity is always looking at the question, how is this presentation or conversation or activity going to positively affect the life quality in terms of access to meeting people's needs in the future? The long-term future? How is this presentation or conversation or activity gonna positively affect the life quality of people with disabilities in terms of their access to having their needs met in the future in their long-term future?
Diana Pastora Carson:
The focus of disability awareness must be ableism. It must be access, inclusion and belonging, assistive technology, disability history, disability rights, disability justice, and being respectful in the words that we choose to use when speaking with and about people who have disabilities. Or we could call it language. You know, what kind of language do we use? Because our language is a representation of either our ableism or our allyship. So if we focus on those areas that I just mentioned, then we will create awareness about what really affects the long-term life quality of the disability community as a whole. If children, teens, and young adults engage in presentations and conversations about those topics led by people who actually experience disability, their awareness will be about how they can be more empowering to others, how they can be allies, how they can create and protect access for others, how they can ensure belonging for everyone, how they can support everyone's needs being met.
Diana Pastora Carson:
These kinds of lessons, and this area of focus is not something that can be easily unlearned, especially if students receive consistent doses of inclusion and beyond awareness presentations over the stretch of their schooling career. This social model paradigm will stay with them through adulthood when they become the educators, the policymakers, the business owners, law enforcement officers, community servants, neighbors, and parents of disabled individuals, not to mention voting members of society. So if you've been on the fence about taking your school or community or even your family beyond awareness, please don't wait. We are in a crisis. We have been in a crisis for a long time. Taking our young people as well as educators and educational leaders beyond awareness is the only way that I see hope for transformation in this situation and so many other situations.
Diana Pastora Carson:
And the truth is that children get it so much faster than adults. Children are not constrained by their imaginations for what is possible. They're not tainted by generations or systems or policies. As I've shared in many episodes, Joaquin is my why this circumstance and so many more circumstances that we experience regularly are preventable, but it takes the will of those who hold the power. I know many of my listeners, you are such empowered people, such compassionate people, you're just people who get it. And so I want to encourage you to take action. How can you help foster disability allyship and access intimacy and equity, inclusion and belonging within your schools and communities that will stand the test of time?
Diana Pastora Carson:
Well, if you haven't already, you can start by grabbing my free resources. The 5 keys to going beyond awareness at www.gobeyondawareness.com/keys, or another free resource is how to Talk with Kids about Disability. And you can find that at www.gobeyondawareness.com/talk. These resources will give you the foundational information you need, however, I encourage you to take it further for me. For Joaquin, for so many millions of people in our communities whose needs are not being met, we must start spreading messages that are consistent with transformational results for the future.
Diana Pastora Carson:
I do have many other resources available to you. If you're serious about actively playing your part, you can get My Beyond Awareness Basics digital course. That's easy, convenient, compact, affordable. For those of you who are busy, busy and prefer digital access to my content.
Diana Pastora Carson:
I also have a Trifold Laminated Beyond Disability Awareness Educator's Guide, which is also compact and easy to follow. It's published through NPR Inc. Um, and it can be purchased through a link on my website, diana pastora carson.com.
Diana Pastora Carson:
And finally, if you like big books with all the details, reproducible plans and scripts and resources, grab my book Beyond Awareness, bringing Disability Into Diversity Work in K 12 Schools and Communities. This is also found on my website, diana pastora carson.com and on Amazon. But all of these links to these items, the free resources and my other resources will also be in the show notes.
Diana Pastora Carson:
The important thing is, if you're passionate about disability awareness, if you're passionate about inclusion, if you care about people with disabilities as far as disability awareness, if you're serious, please don't wait. And stop doing simulations and thinking that it's helpful. And if you're not sure why I said that, then you must go back and listen to episode 34 called "Disability Awareness: Do It Right" where I cover this topic in more detail. Again, my friends, please just get started and get started with a focus on taking folks beyond awareness, beyond awareness. We need this education now more than ever.
Diana Pastora Carson:
I will be back with more episodes and interviews with extraordinary guests hopefully soon. Take care.
Diana Pastora Carson:
Thank you for tuning in to this episode of Beyond Awareness Disability Awareness That Matters. Be sure to subscribe, rate and review this show on Apple Podcasts, Google Podcasts, or Spotify. You can also follow me, Diana on Instagram at Diana Pastora Carson and at facebook.com/go Beyond awareness. Or go to my website for more information at www.dianapastoracarson.com. Links to my books and resources can be found at dianapastoracarson.com/store. For your free Beyond awareness resource called How to Talk About Disability with Kids, simply go to go beyond awareness.com/talk. Podcast transcription and podcast guest information can be found in the show notes, intro and outro music 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.
