Diana Pastora Carson:
Hi there. Thank you so much for joining me today. Before we get started with our amazing guest, I wanna tell you about a brand new disability awareness educators guide that I am so excited to announce. It's published through National Professional Resources Inc. And it's a trifold laminated Beyond Disability Awareness: An Educators Guide that really takes everything that you will find in my books and on the podcast, and just gives you...It's kind of like Cliff's Notes of disability awareness in a way that's respectful and founded in research and a social justice lens. So if you're interested in checking it out, you can go to DianaPastoraCarson.com/store, and you'll find a link there. Now, let's get started.
Diana Pastora Carson:
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:
Hi everyone, and welcome back to the Beyond Awareness: Disability Awareness That Matters podcast. I am so excited to have Danny Whitty here to share with us today, and Danny is accompanied by his sister Tara as well. I'm really looking forward to this conversation. We have so many things in common, connections, life experiences in common, and I'm just delighted and appreciative that you took time out of your very busy schedules to be with us today, Danny and Tara. So why don't we begin?
Danny & Tara:
O l u t e. Absolutely. Absolutely.
Diana Pastora Carson:
Thank you. Thank you. Okay. So (Danny: "Done and done.") Yeah. So we're gonna go ahead and start with you introducing yourself. Danny, how do you identify? When were you diagnosed with autism and anything else that you wanna share with us?
Tara:
Yeah, So Danny prepared an answer to this ahead of time, and I assume you want, do you want to read it or do you want me to read it?
Danny & Tara:
I W I L L T R Y... I will try. All right, Mr. Okay, there you go. I am O K A Y.
Danny:
(Danny reads, and Tara re-reads) I am an unreliably-speaking autistic, and I have apraxia. I am functionally pretty much non-speaking. I was diagnosed as a young child in Japan around three or so.
Tara:
And then for me, I'm his older sister and his primary C R P, which is Communication Regulation Partner. Uh, and we use spelling to communicate as a communication mode together. Anything you wanna add to your introduction?
Danny:
I A M S O T H R I L L E D. I'm so thrilled. T and O B E H E R E. Exclamation mark. I'm so thrilled to be here. "Done and done."
Diana Pastora Carson:
Ugh. I'm thrilled to have you, Danny. So thrilled. All right. So Danny, oh, I, before we move on to the next question, I just wanna describe for the audience that, um, you are sitting in what looks to be like your home, kitchen area, dining area, dining room table, and Tara, you're sitting next to Danny. Danny, you're sitting with a letter board that you are typing on, and Tara is supporting you, emotionally I presume, and mm-hmm. , and just helping you to, I'm not sure, you know, you say communication regulation partner. Can you just describe that very quickly, briefly about what a communication partner...
Tara:
Y O U, okay. He wants me to describe it. So it's, um, the emotional support piece, is that's where the regulation comes in, right? So helping A C R P basically helps their spelling partners, their communication partner, stay focused. Mm-hmm. , there's a lot of noise going on in the motorist sensory system, which is why there is this kind of AP apraxia, this brain body disconnect, and there's an emotional component to it. Anxiety can be really destabilizing. So a communication partner, not only are you supposed to be, you know, proficient in the mechanics of the communication itself, but you're also really there to help center and ground and focus your partner.
Diana Pastora Carson:
Wonderful. Thank you so much for setting that stage for us. Mm-hmm. . So Danny, you type to communicate and you have, as we mentioned, your communication regulation partner, who is your sister Tara, but when you were younger, a child, where did you go to school? You know, what type of setting were you placed in, and what was that educational experience like for you? And did you have access to communication back then?
Tara:
Yeah, so this is another one he wrote out, and I assume you're gonna, you wanna read it?
Danny:
(Danny reading from his pre-written response to the question).
Tara:
Mm-hmm. . So he wrote, it was awful, and it traumatized me. It was public school, special education, and really demeaning. Hmm. I had no access to communication yet, but even students now struggle to get schools to accept spelling to communicate or s t c and similar forms of communication.
Diana Pastora Carson:
Wow. Danny, I'm so sorry that that was the educational experience for you, and I'm so, so happy to see that you now have access to communication. I can only imagine what that was like as, you know, um, as a sibling, um, but also as a classroom teacher and a former special education classroom teacher, you know? Um, and I certainly,
Tara:
I mean, as his, sorry, Danny, as his kind of quote unquote mama bear older sister, it was really bad. Like he was allowed to just hide in a closet to escape from the chaos of the classroom. And like, he was just left there. And that was okay. And my, my parents were absolutely ridiculed being like, we know he's smart. Oh, like, you need to give him more. And they were like, oh, Danny, holding, you're holding,
Diana Pastora Carson:
You're holding up your letter board. You wanna say something else, Danny?
Danny:
...N K YOU SIS . T E R B E A R. Thank you. Sister Bear. (Danny: "Thank you. Sister Bear.")
Diana Pastora Carson:
. Yes. From one sister bear to another. Thank you. For sure. Yeah, for sure. So in homes and in schools, there are many parents as well as educators. Mm-hmm. and family members, um, who have never met anyone who communicates through typing, you know, to, I'm just, I've seen so many typers, and so it's become the norm for me, but for many people, they haven't seen it, or those who have seen it, have been very skeptical about it and unaccepting of it, even in professional circles. Many people have no idea yet about presuming competence, and so they can't fathom that a student who, or a child who is autistic and is non-speaking would have anything to say. There is this presumption of incompetence. So can you just share with us about presumption of competence?
Tara:
Yeah. Danny, this, this is another one you've prepared. So let's, let's cue this up so you can read it right there.
Danny:
(Danny reading) [inaudible] mm-hmm.
Speaker 2:
Even if I had no communication as a youth, if people had presumed competence, my life would've been much better. It is about respecting a human and seeing beyond your assumptions and ego. It is so important. I don't know if there's anything you wanted to add. Um, I t i s l n a c k i n g t h r o u g h o u t t h e e d s y s t e m. Mm-hmm. , it is lacking throughout the ED education system.
Diana Pastora Carson:
Yes.
Tara:
Exclamation point. Yes.
Diana Pastora Carson:
I got it. And I agree, Danny.
Danny:
Danny speaking... Tara "Mm-hmm."
Diana Pastora Carson:
Danny, this, this is not... oh, you wanted to say something else?
Tara:
He said, "not now."
Diana Pastora Carson:
Okay. That's okay. Um, I noticed that you're using a letter board, which is very low tech, and I'm wondering if you have ever used any of the higher tech options for communication and if they worked for you or not, and why or why not?
Danny:
I, uh, after A, I am a... S I M P L E M N, I am a simple man, exclamation point.
Danny & Tara:
I H A V E N O T U S E D...I have not used E L E C T R O N I C D E V I C E S B N E Y O N D B L U E T O O T H K E Y B. I have not used electronic devices beyond, or besides, sorry, uh, Bluetooth keyboards, he abbreviated that key bs, um mm-hmm. keyboards, B U T I T H I N K I P R E F E R T H E F R E E D O. But I think I prefer the freedom O F C H O O S I N G M Y O W N L E T T, uh, of choosing my own letters
Danny & Tara:
And A N D F U l l y C e u s t o m i c i n g m y o e t. Okay. P you fully customizing my output. A N D I T I S M Y O W N and it is my own P A T H T H A T B R O U G H T M... It is my own path that brought me T O L A M I N A T E D B O A R D. That brought me to laminated boards. A N D I T H A S W O R K E D G R E A T S O N O N E E D T O T H A N G E. Mm-hmm. . And it has worked great. So no need to change exclamation.
Diana Pastora Carson:
That's great. Thank you. And Danny, I just, no, I noticed how
Diana Pastora Carson:
I noticed how it's almost poetic watching you type. Your eyes are directly on the board and your fingers just flow so beautifully. It's mesmerizing to watch you communicate like that is part of the communication is the, the intensity and the passion with which you are communicating on that letter board. Um, and I appreciate you answering that. That's my brother's preferred way to communicate is through a letter board as well, for his own reasons. Mm-hmm.
Danny & Tara:
It's so P N E R S O N K mm-hmm. . It is so personal. Yeah. B U I T H I N K M A N Y P R E F E R T H E F R E E T Y P I N G... But I think many prefer the free typing, exclamation point.
Diana Pastora Carson:
Yes. Thank you, Danny. Appreciate that. So how did Tara get involved in supporting you and your communication and have you had other communication partners? I don't know if you wanna answer that or if you'd like Tara to answer.
Tara:
Yeah, so Danny said he wants me to answer probably in part because we both just got back from a family trip to Japan, and he's very jet-lagged, , little lower energy than usual. So I had been working abroad in, in Myanmar for a couple of years, and we knew Danny could use spelling to communicate, but no one had been really able to pick it up with him in the home. And, um, it just really weighed on me. I was like, someone should be doing this. And then sadly, our, our dad passed away in 2018, and they were, they were close, very close. And, um, I just felt, you know, I'm burned out on my job. I love it, but I'm burned out. I wanna be home with my brother and I wanna, you know, be with him for a year and see what happens.
Tara:
And had no idea, , no idea the world that would open up to both of us and to the whole family through gaining fluency. And we actually gained fluency much more quickly than I had anticipated. And, uh, it happened that I moved back right before the pandemic started. So we were in lockdown together, practicing all day, every day. So . Yeah. So that's how that came to be. And so I'm actually now in training to be a practitioner of spelling to communicate with other non speakers and their families. Uh, and Danny's, it was kind of Danny's idea. So , he's been my cheerleader. As for other CRP's, our other sister, our younger sister, Ara, she's also very fluent with Danny now. Um, our mom is getting very, very close. And Danny spells with, uh, couple of practitioners at Speller Center in San Diego, Dawnmarie and Johnny Perez. And the original CRP who introduced him was Elizabeth Vossler on the East coast, the founder of International Association for spelling as communication.
Diana Pastora Carson:
That's fabulous. Wow.
Danny:
Y E S... Yes. All right.
Diana Pastora Carson:
Oh, that's great. That's great. Well, I have to definitely keep in touch with you cuz I would love to have Joaquin meet you as well and see what you think. All right. So do you have any favorite communication partners, Danny, and why are they your favorite?
Tara:
?
Diana Pastora Carson:
What makes a good communication partner?
Tara:
Do you wanna read it?
Tara:
Can I have a break there?
Danny & Tara:
Yes, . So, we had fun spelling this answer out. Danny spelled "Eew... This is awkward. Haha. Just kidding." Tara is my main and favorite CRP, but I love them all. Each communication partnership is unique and cherished.
Diana Pastora Carson:
Danny, you have a big grin on your face as you guys are reading this. .
Tara:
W E H A V E F U N...We have fun. He's spelled. (Danny: "We have fun!) We sure do.
Diana Pastora Carson:
I can tell.
Danny & Tara:
So, as for a good communication partner, he wrote a good CRP is above all genuinely invested in my communication. They care about my rights and dignity and dreams. They see my identity and they are mindful of my autonomy and my needs.
Diana Pastora Carson:
Oohh...
Tara:
He's gotta way with words.
Diana Pastora Carson:
That is beautiful. That brought me to tears. That was so well-said. Thank you.
Danny:
Wow. I A M G L A D I T R E S O N A T E D exclamation point. Wow. I am glad it resonated!
Diana Pastora Carson:
So, so much. Thank you Danny. All right. I need to get a tissue . Sorry. That was so powerful. And I think that, you know, parents need to know that, you know, that's not just for a communication partner, but for all of our, all of our children and teachers,
Danny & Tara:
H A R D T O S H I F T... It is so hard to shift. F R O M
Danny:
A S S U M I N G A N D M A K I N G D E C I S I O N S F O R S O... It is so hard to shift from making assumptions and decisions for S O, which is his abbreviation for someone, A N D I T I S A mm-hmm. ... And it is a G R O W I N G P R O C E S S F O R P A R E N T S O N C E T H E I R K I D S G A I N C O M M U N I C A T I O N... And it is a growing process for parents once their kids gain communication, period.
Diana Pastora Carson:
Absolutely. It is a growing process and I always tell Joaquin, he is one of the most patient people I know, you know, because so often children and students need to wait way too long for people to finally get it. So I thank you for your, you know, your advocacy as well as your understanding of that process. Mm-hmm. . So in your eyes, what would be a dream educational experience and or a dream teacher, Danny?
Danny & Tara:
And this is where we we're not able to prepare the answers, so he'll be spelling this live. I A M S O B E L I E V I N G I N A U T O N O M Y... I'm so believing in autonomy, A N D A G E N C Y A S G U I D I N G P R I N C I P L E S... and agency as guiding principles, exclamation point. So autonomy and agency as guiding principles. S O A T A I L O R E DP R O G R A M T H A... So a tailored program that T E A C H E S B U T A L S O R E S P O N D S...That teaches but also responds, T O S T U D E N T S N E E D S to students needs... Uhhuh S T S...interests, to students needs and interests, exclamation. Anything else?
Danny & Tara:
Get, get it, get it. I T I S A B I G Q U E S T I O N... It is a big question. B U T T H A T I S M Y B R I E F A N S W E R... But that is my brief answer, exclamation point.
Diana Pastora Carson:
Well, it was a very full answer, even albeit brief. You, you were just succinct with, with your words. Mm-hmm. . Yes. Thank you. So then in a school or even a community culture, what are some things that people can do or say just to bring it to a concrete level for people? You know, this might be very macro for some of my listeners mm-hmm. , but what are some things that people can do or say when they meet somebody who has unreliable or limited communication in order to grant them respect and dignity and autonomy?
Danny & Tara:
G O I N G B A C K T P R E S U M I N G C O M P E T E N C... Going back to presuming competence, A L W A Y S S D O T H A T... Always do that. S P E A K T O U... Speak to us, A S I F W E U N D E R S T A... As if we understand mm-hmm. , L I K E because we likely D O... Because we likely do, exclamation point.
Danny & Tara:
, A N D S P E A K T O U S. I N A and G E A P P R O P R I A T... Speak to us in age appropriate, W A Y... age appropriate ways. I A M N O T F I V E E V E N T H O U G H M Y B O D Y I S A B I T T O D D L E R L I K E I N I T S A C T I O N S... I am not five, even though my body is a bit toddler-like in its actions, exclamation point.
Danny:
Done and done!
Diana Pastora Carson:
Yeah. Beautifully-stated. Thank you. Okay. Danny, if you could say anything to young Dannys out there in the world who don't yet have access to communication, what would you wanna say to them?
Danny:
T H I S I S S U C H A...Mm-hmm. This is, this is such a M E A N I N G F U L Q U E S T I O... This is such a meaningful question because I O F T E N W I S H I C O U L D... Is it because I often wish he, he spells because it's bc because I often wish, I C O U L D,... I could D O T H E SA M E T O Y O U N G E R M, I often wish I could do the same to younger me, Period. I T R Y T O C, uh, which one was that? I T R Y T O C and O M F O R T M Y I N N E R C H I L D... I try to comfort my inner child, O F T E... Often, period.
Diana Pastora Carson:
Wow.
Danny & Tara:
S O I W O U L D S A Y. (Tara begins to cry..."You're gonna make me cry.")
Diana Pastora Carson:
Oh my God, Danny, you have us both crying.
Danny:
A R E S O S P E C I A L... You are so special. Mm-hmm. , A N D W O R T H W H I... And worthwhile.
Danny:
"And worthwhile."
Diana Pastora Carson:
Mm.
Danny:
And N O T A L O N E... Not alone.
Diana Pastora Carson:
That was, that's a mic drop for sure. Thank you so much.
Danny:
Y O U W I L L F I N D B E A U T Y I N T H I S L I F ... You will find beauty in this life. A N D Y O U A R E S O S T R O N G... Oh, and you are so strong. And, and so A G I F T... And so a gift.
Diana Pastora Carson:
Oh yes. Oh wow. That's,
Tara:
Anything else? I'm sure you would love to have a whole conversation, but,
Diana Pastora Carson:
So for the listeners, Tara and I both have Kleenex out.
Danny & Tara:
That is enough. Uhhuh. That is enough cheers for now, he spells exclamation point.
Diana Pastora Carson:
Thank you so much for that message, and I hope that somebody is with their family or their educator listening to this podcast and heard that from you.
Danny:
I am, S O D R I V E N T O H E L P M Y Y O U N G E R P E E R S... I'm so driven to help my younger peers, and E N C O U R A G E F A M I L I E S T O R E A C H O U T T O M E A N Y T I M E... Uh, and encourage them to reach out to me anytime, exclamation point.
Diana Pastora Carson:
You said that you encourage them to reach out to you at any point. Is that what you said?
Diana Pastora Carson:
(Tara: Yeah.) Okay. I think the internet cut out a bit there, but we got that. Okay. Yes.
Diana Pastora Carson:
So what do you love about your parents, Danny? And may your dad rest in peace, but what do you love about your parents?
Danny:
They're so full of love, exclamation point. Mm-hmm. ,
Tara:
So full of love,
Danny & Tara:
E Y H A V E H A D A T O G H L I f... They have had a tough life and M A D E M I S T A K... And made mistakes. B U T A L W A Y S S H E L T E R E D M E W I T H L O V E... But always sheltered me with love, exclamation point.
Diana Pastora Carson:
Wow, that's great. That's beautiful. Thank you Danny. And your sister, and your sisters, I should say. You have two sisters. What do you love about your sisters?
Tara:
Is this gonna be another awkward answer? . All right. 1, 2, 3. Get you focused...
Danny:
H A... Haha. N O N O T A W K W A R... Haha, not awkward, exclamation point. T H E Y A R E S F I E R C E I N T H E I R L O V E... They're so fierce in their love. F O R M... For me, and R E A L L Y, really A and L W A Y S H A V E B E E N... And really always have been, A N D T H E Y A R E M Y B E S T F R I E N D S... And they're my best friends.
Diana Pastora Carson:
I love it.
Danny:
A N D M Y R O C K...and my rocks. And E A C H U N I Q U E B U.... But and each unique, but S O S O S O...but so, so so, Mm-hmm. after O U N I T E D I N L O V E F O R M E. Mm-hmm. . Excellent. But so, so each unique, but so united in their love for me, so, so, so united in their love for me. Oh, wow. Mm-hmm. , T H E Y A R E S O A M A Z I N... They're so amazing. (Tara: Thank you, Danny) A N D I A M... And I am L U C K Y L I K E.... Mm-hmm. , Y O U R B R O T H E R, exclamation... And I'm so lucky, just like your brother, exclamation point.
Diana Pastora Carson:
Yeah. Thank you so much. Thank you so much, Danny. You know, I feel like Yeah, Joaquin is lucky, just like you're lucky, but I think Tara will agree that we are so, so lucky.
Tara:
Yeah, absolutely. To Have you as our teachers, so thank you.
Tara:
Yeah. Well, one thing, we've, we've mentioned this in different platforms before, but like, selfishly, I mean, unselfishly seeing Danny thrive with communication is the most amazing thing I've seen. Selfishly, I get to . I'm now emotional too. I get to more deeply know this person I've loved my whole life, and, he's my rock. Like whenever I have anything going on in my life, I know Danny will have something grounding and wise and kind to say.
Diana Pastora Carson:
Yeah. Wow. That's beautiful. Oh my gosh, what a, an honor to share this moment with you both. Thank you.
Danny & Tara:
S H E I S... Uhhuh . She is S O, Uhhuh Uhhuh , yes. B L U E S K I E S...He says, she is so my blue skies. So we started calling each other like funny little pet names throughout the pandemic, but the one we've stuck with is love, be like, Hey, sunshine. And he'll be like, hi, my blue skies . But the funniest was, I think one time I, I don't know what I called you, it was some kind of sweet food. Like I think I said, hi there, pumpkin. And he said, hi, my sweet potato , I've never been called...
Diana Pastora Carson:
.
Danny:
B L U E S K I E S I S B E T T E... Blue Skies is better. Oh, okay, I agree. Blue skies is better than sweet potato.
Diana Pastora Carson:
Well, next, next time you can just call her snot face because the two of us are .
Danny:
I A M S O G L A D W E M E T O N L I N... I'm so glad we met online. A N D I T R U L Y W A N T T O M E E T I N P E R S O N, exclamation... And I truly want to meet in person, exclamation point.
Diana Pastora Carson:
We will do that. We are in the same city. There's no reason why we can't do that.
Diana Pastora Carson:
Mm-hmm. . So, um, Danny, you are a culinary artist and I wondered if you wanted to share anything about your work in the culinary arts.
Danny:
Okay, let's focus I H A V E N T B E E N S O A C T I V E L A T E L Y B C I H A V E B E E N H A V I N G A T O U G H F E W M O N T H...I haven't been active in a, in some time because I've been having a tough few months. B U T I A M S O I N S P I R E D B Y O U R R E C E N T T R I P T O J A P. But I'm so inspired by our recent trip to Japan, exclamation point. Mm-hmm.
Diana Pastora Carson:
Wonderful. I can't wait.
Danny:
I T W A S F O O D H E A V E N, Yeah, you got it... It was food heaven. It was food heaven. A N D S O M U C H C A R E... And so much care I N E A C H P I E C E O F E A C H M and E A. So much care in each piece of each meal. A N D S O M U C H T O T R Y T O E M U L A T E. And so much to try to emulate, exclamation plan.
Diana Pastora Carson:
Oh, that's wonderful. I can imagine. I'm so glad you got to take that trip and be reinvigorated by that. So how can people connect with you and your past work and your upcoming work, Danny?
Danny & Tara:
That that All right. Let's focus 1, 2, 3. Gimme the letter board. Thank you. T H E E A S I E S T I S D W W W E B S I T E. Mm-hmm. ... The easiest is the DWW website, which is shorthand for Danny with Words website. So that's just Danny with words.com and that has links to his social media and his other project, Leo in Bloom, which is going to be resuming in April with a new addition to the team. Yes. Anything else? T H A T I S I T... That is, that is it, exclamation point. I A M O N I G A N D F B A T D W W...I am on Instagram and Facebook at Danny with Words.
Diana Pastora Carson:
Beautiful. Thank you so much. Thank you both so, so much. Danny, thank you for sharing from your soul.
Danny:
I S O L O V E D T H... I so loved this. And P L E A S E S A Y H I T O Y O U R B R O T H E R F R O M M E... Excellent. And please say hi to your brother from me.
Diana Pastora Carson:
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. Be well, be a lifelong learner, and let's be inclusive. See you next time.
