The Call for Access to Spelling for Nonspeakers in Schools with Danny and Tara Whitty ~ 1203

Tim Villegas
Hi friends. It’s Tim Villegas, and you are listening to or watching Think Inclusive, our podcast from the Maryland Coalition for Inclusive Education. This podcast explores inclusive practices in schools and communities through conversations with those who are doing the work of inclusion in the real world. I’m so excited to bring my conversation with Danny and Tara Whitty to you, because it was probably one of the most fun conversations I’ve had, and one of the most technically challenging to edit. If you watch the YouTube video, you’ll see what I mean with the different cuts and multiple scenes. It was a really great time, and I think you are going to really love Danny, and of course, his sister, but mostly the insights that he brings as a speller. Now, if you don’t know what a speller is, Danny will explain it during our conversation. For some nonspeakers, they use a letter board, which means someone holds up a laminated board, and the person uses their index finger or fingers to point at the letters to spell. When I’ve talked to other people about spellers, sometimes I get the deer in headlights look, like, “Oh my gosh, Tim, what are you talking about? Isn’t that facilitated communication?” Well, Danny and Tara get into that discussion, and it’s definitely worth a listen. Other times I talk about spelling to communicate, and the presumption is that this form of communication is not valid. There has to be some other explanation why the person is pointing to the letters and communicating in the way that they do. I’d like to invite you to have an open mind with this conversation, whether you’re listening to the audio version or watching on YouTube. The reality is that there are many, many nonspeakers who need access to this type of communication, and we are not, as a field in education, in schools, doing ourselves or anyone else any favors by keeping this type of communication out of schools. It’s going to be a great conversation. I’m really excited for this. Before we get into the interview, I just want to shout out our sponsor for this season, IXL. IXL is a personalized online teaching and learning solution, designed for teachers to accomplish what would normally take a number of different tools. I was checking out the website the other day, and they have tools for SAT and ACT prep, in case you are on the secondary end of education. At least I know in the state of Georgia, where I live, a number of schools use IXL for formative assessments on how grade levels are doing throughout the year. If that is interesting to you, go to ixl.com/inclusive to learn more. That’s ixl.com/inclusive. After a short break, my conversation with Danny and Tara Whitty.

Okay, here we go. Danny and Tara Whitty, how are you doing?

Danny Whitty
I’m great. Happy to be here.

Tara Whitty
Great. Happy to be here.

Tim Villegas
Fantastic. I just want to welcome Danny and Tara Whitty to the Think Inclusive podcast. Before we get too far into our conversation, I know that Danny wanted to explain a little bit about his communication style, so I’ll let you all take it away.

Danny Whitty
Thank you.

Tara Whitty
Why will you please explain?

Danny Whitty
Explain.

Tara Whitty
Sure. Danny uses spelling to communicate. He is a nonspeaking autistic person, so spelling to communicate is similar to Rapid Prompting Method or Speller’s Method. These are methods where nonspeakers can spell out their words, letter by letter, on a variety of different things. Danny likes to use a laminate board with the alphabet on it. He can also use a keyboard, but he finds the laminate easier. His mode of communication is a little unique in that he does have quite a bit of speech, and he likes to actively work on it. When he has energy, he will spell. He will read out what he’s spelling, but that can be quite taxing. If he’s not able to do that, I’ll read out the words that he spells. Or if he says his words very quickly, I’ll reread them. Sometimes, if he has a chance to prepare his remarks ahead of time, we’ll use a text-to-speech voice that he’s chosen. Is there anything else you want to add, Danny?

Danny Whitty
No, that is good.

Tara Whitty
In addition to being his sister, I am his main communication regulation partner, which is a necessary role to help keep the speller, as we call the person who spells to communicate, regulated and focused.

Danny Whitty
All right, all right, all right.

Tim Villegas
Thank you so much for explaining that. I know this is an audio podcast, but we are recording the video as well, so if you are listening to this, this might be an opportunity for you to switch over to YouTube and the video, because I think that might be informative as well in our discussion. Let’s go ahead and get started. In order for our conversation to flow the way that we all wanted to, I gave Danny some questions beforehand so that he could pre-answer those questions in our discussion, and then the latter part of our conversation will be more of a back-and-forth question and answer. I just wanted to put that up front as well. Let’s go ahead and start with the first question. Danny, what was your life like before you started spelling to communicate?

Danny Whitty
It was a shadow of a life. I could not communicate my ideas, feelings, thoughts on anything. Imagine never having been able to do any of that. I was marginalized in school and society, treated as intellectually disabled, even though I craved intellectual stimulation, and made to feel as if I were a waste of space. I couldn’t exercise any autonomy in my life. I was constantly depressed.

Tim Villegas
I want to ask a follow-up question. How do you feel about that, Danny, if I asked you a question about that?

Tara Whitty
Sure.

Danny Whitty
Sure.

Tim Villegas
I’m focused on that phrase, “shadow of a life.” So what I’m hearing you say is that you didn’t feel like you were fully living. Is that right?

Danny Whitty
Exactly.

Tara Whitty
It was altered.

Danny Whitty
It was altered.

Tim Villegas
Let’s go to the next question. What is a barrier to full inclusion in your life right now?

Danny Whitty
One of several is the difficulty in hiring a communication regulation partner outside of my family. I want to have more autonomy in my daily life without having to rely on family availability. Also, just widespread ignorance about nonspeaking autistics that makes it hard to feel accepted.

Tim Villegas
Can you explain more or tell us more about how difficult it is to hire a communication regulation partner?

Tara Whitty
It’s a tough time to find good support people since the pandemic. Training someone to be a communication regulation partner is time-consuming, and they often leave to further their careers.

Tim Villegas
I wanted to comment on what you said about communication regulation partners and them leaving. So it’s hard to have a steady one. It’s very similar to what happens in classrooms with paraprofessionals who aren’t fully credentialed teachers. What ends up happening is they are working in a classroom, or maybe working with one student, and then they are like, “Oh, I really like this. I want to become a teacher.” And then they move on. So it’s a high turnover.

Danny Whitty
Yeah.

Tara Whitty
I think these jobs aren’t respected or paid enough.

Tim Villegas
Me, 100%. Yeah. All right, let’s go to the third question. We have a lot of educators that listen. So what do you wish educators knew about people who spell to communicate?

Tara Whitty
Are you gonna press play?

Danny Whitty
That we are extremely bright and eager to learn. Kindness and understanding help us more than assuming our bodies are meant to be disciplined or ashamed. Our communication is valid. Educators have the power to change our lives for better or worse, and it is not too hard to choose to be a positive influence instead of a source of trauma.

Tim Villegas
Danny, when did you learn how to spell to communicate? Was it when you were in school or was it after?

Danny Whitty
No, in my 30s.

Tara Whitty
No, in my 30s.

Tim Villegas
Oh, gosh. What would it have been like if you had had access to the letter board when you were in school?

Tara Whitty
In theory, it would have been a totally different experience, but my younger peers are being denied use of spelling in schools today.

Tim Villegas
Yeah, you provided a really good segue. Did you want to say something?

Tara Whitty
How I explained my schooling experience? Yeah, briefly. So Danny went to public school in Poway, California, which is supposed to be a good school for neurotypical kids, but our family’s experience with special education was abysmal. I think the worst was high school, when the classroom was so poorly managed, Danny would sit in the closet to escape the chaos, and was just left to sit in the closet during class time. I know this because I had a friend who was a teaching assistant, and she shared this with me. My parents’ efforts to convince the teachers that Danny had some intellectual capacity—our mom taught him up to pre-calculus, even without the letter board—were laughed at and told that the school didn’t need to provide him any such services, even though now we know better what the laws were and still are, and they should have given him all that. So it was a very negative experience for him and for our parents too. Anything to change about that or add, Danny?

Danny Whitty
No, it was so awful.

Tim Villegas
Yeah, you said something interesting about your younger peers, that young people are being denied access to spelling to communicate. That leads us into this next question about people being skeptical. So the fourth question is: Are people skeptical that you are really typing the words? And what would you say to people who think spelling to communicate is fake?

Danny Whitty
I’m sure some are. I am honestly so impatient with skeptics. They are so stuck in their biases. It is frustrating that people who claim to be experts are so closed-minded and so bad at inquiring into their own assumptions. I wish I didn’t need to care about your misinformed opinions, but we need wider acceptance of spelling to make it accessible to underserved populations. So I recommend thinking deeply about why so many people would fake this. It is ridiculous to assume that families around the world are uprooting their dynamics and routines to merely fulfill a hypothetical delusion that their children are brilliant. Most of them never hoped for geniuses. They just wanted to know what their loved one was thinking. They were not imagining that their nonspeaker might be a masterful poet or accomplished advocate or brilliant songwriter. Yet many of us are. Also, you are interfering with people accessing the human right to communication based on dogma and mindless assumptions. Shame on you. That is a part of what I would say.

Tim Villegas
Danny, you’re bringing the fire.

Tara Whitty
It’s fiery.

Tim Villegas
Oh my gosh, I love it so much.

Danny Whitty
Yeah, go ahead.

Tim Villegas
Yeah, yeah, please.

Tara Whitty
Go ahead.

Danny Whitty
I’m so hot. I’m sad.

Tara Whitty
I’m so outraged by these ignorant bullies.

Danny Whitty
I’m so outraged by these ignorant bullies. Yeah, me too.

Tim Villegas
Yeah, me too. I just want to name and call out, for instance, there are organizations out there right now, and I believe it’s—I’m going to get it wrong, so I’m going to look this up, because I want to make sure I get it right. Hold on a second, American Speech-Language-Hearing Association. Is that right? So, yeah. So ASHA, yeah. I know that there was a statement that ASHA has provided about spelling to communicate and other forms of typing and spelling. I don’t have the exact words, but I do know the gist of it: that this particular style of communication, they are not saying it’s reliable, and I think that may be a big part of the reason why we’re not seeing it in schools as much as we would like, because a lot of SLPs, a lot of speech and language pathologists work in schools, and there’s a lot of bias against this kind of communication. Do you have any thoughts about that?

Tara Whitty
Share some of what we have discussed. Oh, where to start? Danny, I have a PhD in a completely different field, but I know how evidence bases are established, and I’ve read some of the original studies on which this premise is based, and they’re not well designed. They take a really complex phenomenon like communication and try to replicate it in high-stress lab situations, but also it really demonstrates a downfall of experts in any field. I trust expertise, I trust science. But when experts forget to open their minds to new possibilities, or they choose to ignore their biases or not confront their biases, then there is a real risk of faulty assumptions becoming dogma. It’s really disappointing. It’s clearly what’s happening here. For example, ABA—there’s not really an evidence base for that. There’s actually quite a lot of evidence that it’s—Danny, do you want to come sit down? Think he’s getting upset. Danny, you want to bring your buddy back here? He’s just taking a little walking break. All right? I think he’s okay. He’s just standing there. There’s been a lot of anecdotal evidence that ABA is traumatic for its participants, especially in earlier decades, and yet that’s still approved and covered by insurance, for example. Not having an evidence base doesn’t mean something isn’t valid, it just means there hasn’t been enough research done into it to point to peer-reviewed publications, which takes a lot of time. I think it speaks to a huge disrespect of families that these professionals are ignoring the very real stories and experiences that families are going through, and if they even took the time to sit with families and talk to them about how their lives have changed with access to spelling and observed—if someone were following me and Danny all day, they would see there’s no way that I’m manipulating what he’s saying. There’s no opportunity for that kind of interaction to even enter into what we’re doing. I understand there’s concerns about facilitated communication, which was kind of the precursor to these other methods being misused. Those are cases of malpractice, not cases of the method not being valid. We see malpractice in all sorts of fields—medicine, veterinary practices, therapy, education—and yet those practices are allowed to keep moving forward, and those bad instances are seen as examples of bad practitioners. Those are just some of the thoughts. Danny, I feel like I’m rambling, because there’s so much to say about this. Do you have anything to add or change?

Danny Whitty
No, I echo all of that. One of the silly arguments I’ve seen on SLP posts on social media is that this method makes the speller dependent on a communication partner. That’s the nature of their disability. They are high support; they’re dependent on either someone who they can’t communicate with, or they’re dependent and they can communicate with someone. So it just shows a real disconnect with what disability actually is and what the reality of that life is.

Tim Villegas
Right?

Tara Whitty
It’s so silly.

Tim Villegas
So silly. Danny, you said you started when you were 30. So—

Danny Whitty
That did the part.

Tim Villegas
How long did it take in order for you to communicate at this level?

Tara Whitty
It was unusually fast to pick it up. It took a day with Elizabeth Vossler, the founder of Spelling to Communicate, but my peers often take longer because they have more complex motor issues. To explain my journey: he learned quite quickly with Elizabeth Vossler, but she’s not based in Southern California, which is where we live, and at the time, there weren’t any practitioners nearby who Danny clicked with. My mom tried for a bit but did not feel confident that this was something she could do on her own, so it just kind of fell by the wayside until I resigned from my job and moved home four years later to focus on this with Danny. By then, Dawn Marie opened a center in San Diego, and she’s also a very good practitioner. Danny started going to her, and she showed me a few times how to do it. When I was here right before lockdown and during lockdown, we had nothing else to do during those long hours but practice, and we became fluent actually quite quickly once we really tried at it consistently. With other family members, they’ve also gained fluency. It’s been a different timeline for everybody, and that long gap—about four years since we learned he could do this before anyone in the family picked it up and he had access to it in his daily life—caused a lot of rightful resentment on Danny’s part. “You guys know why I’m in here. You know I can do this. Why did no one step up?” For us, it came down to a lack of confidence, a lack of fully understanding how it worked at the time, and also, honestly, being a bit ableist over the years. He’d been without communication for 30 years, and we just got used to his life being, as he said, a shadow of a life. We didn’t really think communication equals a whole new life. We didn’t stop to think about the potential. When I moved home, I thought, “I’ll move home for a year and help my brother communicate.” I never really felt like with communication, he can advocate for himself, tell us what he wants to do, pursue dreams, want a social life, and all of that is going to require a support person. If we’d been more clued in to the potential for a rich, fulfilling life with communication, I think we would have jumped on it much sooner, but that sense was dulled over the years by messaging from society that he was somehow lesser than or what we could expect from his life was less than.

Danny Whitty
I’m so glad you acknowledge it. It was so hard, and that’s one of the reasons why there’s a wider acceptance of this communication method. I became trained as a practitioner because I was so inspired by how it changed Danny’s life and our whole family’s life. I get the sense that we can train a lot more nonspeakers to spell to communicate, but getting them access to that communication in their daily life is a bigger hurdle, actually, and that kind of torture for the person—to know people know I can do this, and yet I can’t actually practically do it in my everyday life—is a big issue. So that remains.

Tara Whitty
There’s a big gap.

Tim Villegas
Yeah. Well, we have some more questions, and I feel like we could talk for a whole other hour, but I do want to get through the questions and then see where we are. One of the things I pulled out when I was looking at the content you have on your social media feed and also in your podcast was about the word “disability.” Why is “disability” a word that is important for you to use? Go ahead.

Danny Whitty
It is a reality that my autism disables me. There is so much agony because of it. So it is an accurate word for my disability. I am disabled. It affects me in profound ways. It’s not my defining characteristic as a human, but it is pretty damned important. It signals that I need support in specific ways. My experience in the world is significantly different in important ways from the experiences of nondisabled folks. It is useful for practical reasons, and also for identity and advocacy community.

Tara Whitty
I’m so proud to be disabled because it means I am a resilient and strong person.

Tim Villegas
I love it. Danny, are there disabled advocates and activists that you look up to, or are mentors to you personally?

Danny Whitty
That is a great question, because I have only recently been able to learn about disability justice as a movement. Before communication, I couldn’t express my interest in disability justice, and anyway, I was so isolated and couldn’t imagine such a movement existed. My family was preoccupied with taking care of me within the household, and had no hopes of me being part of such a community. Long story short, among many, I admire Tiffany Hammond of Fidgets and Fries, Tiffany Joseph of Nigh Functioning Autism, Elizabeth Bonker with Communication for All, and Bob Williams of Communication First.

Tara Whitty
There are many I admire, but they’re the ones I actively learn from the most.

Tim Villegas
All right. Anything to add?

Danny Whitty
No, nothing to add.

Tim Villegas
All right. Tell us about your podcast. Why did you start All Our Brave Hearts and what’s it like producing a podcast?

Danny Whitty
I love this podcast so much. It is a great way to share ideas in an in-depth way that allows me to show how I communicate, how a conversation with a speller can be lively and deep, and how awesome my relationship with my sister is. I truly stand by our motivation to encourage listeners to embrace and celebrate interdependence. This is key to more acceptance of disabled lives, and it is key to a more broadly compassionate, just, and peaceful society. We hope that more people who are not in the disability realm start to listen. Our current audience is mainly people who are involved in autism advocacy or who are families of nonspeakers. We love them and their support, but we feel that more people need to learn about experiences that they are not familiar with. So that is a big goal.

Tara Whitty
Please play.

Danny Whitty
It is a lot of work, and my sister does most of the labor. She is a great collaborator. We plan everything together, including the design of our social media posts. It is a great feeling to create something that people get to experience and enjoy and learn from. This means a lot to me as someone who had no means of communication for decades.

Tim Villegas
Did you want to add anything, Danny?

Tara Whitty
I encourage all to listen, even if you don’t have direct experience with nonspeaking.

Danny Whitty
No, I’m just excited.

Tim Villegas
Good, good.

Tim Villegas
Well, the people that listen to this podcast, I think, will be really interested in your podcast, All Our Brave Hearts, and your social media accounts. One of the things that we find for the people who listen to Think Inclusive is that there are a lot of professors that share resources with their students who are wanting to become teachers, teachers who share with their students, and principals and district leaders who share with educators—all around changing mindsets around people with disabilities. So where can people find more information about y’all?

Tara Whitty
You can do it.

Danny Whitty
At allourbravehearts.substack.com or All Our Brave Hearts on Spotify and Apple Podcasts. I am online at dannywithwords.com and Facebook as Danny With Words, and Instagram at Danny With Words.

Tara Whitty
I’ll try reading that one, maybe with my voice. So yes, just go to allourbravehearts.substack.com, and All Our Brave Hearts is all together, no spaces or anything, or All Our Brave Hearts as separate words on Spotify and Apple Podcasts. I am online at Danny With Words, no punctuation, dot com, and Facebook as Danny With Words, separate words, and Instagram at Danny With Words, all one word without any punctuation.

Tim Villegas
Awesome. Anything else that you want to make sure people know about you?

Tara Whitty
Go ahead and press play.

Danny Whitty
I am just one of millions of nonspeaking autistic people who have spent most of their lives without communication. My ability to communicate is not a feel-good human interest story to briefly marvel at then forget; it is a human rights issue that so many still live without access to reliable communication. This is serious. I appreciate platforms like this to raise awareness of this tragedy. I am hoping that listeners take this to heart.

Tara Whitty
Also, I am a fun guy, in addition to advocating about serious issues.

Tim Villegas
You seem like a fun guy.

Tara Whitty
You are hilarious.

Danny Whitty
Hilarious.

Tara Whitty
I’m hilarious in the right setting and time. Yeah, you really are.

Tim Villegas
Amazing. Oh my gosh, yes, I want to hang out with you more, Danny. I want to hang out with you more. We are—go ahead.

Tara Whitty
Do it sometime.

Tim Villegas
For sure, for sure. We’re nearing the end of our time together, and I’m actually really looking forward to this. This was a segment we like to do called the mystery question. I just have a stack of prompt cards, and I’m gonna pull the top card. I don’t like that one. Sometimes I get to veto the bad mystery. Here we go. This is a good one. Makeup in the morning: What is your number one priority?

Danny Whitty
To poop.

Tim Villegas
That’s a good priority. I mean, everyone has to do it.

Tara Whitty
It’s a basic one.

Danny Whitty
It is a pressing one.

Tim Villegas
Well, as long as we’re talking about this, I’m going to be vulnerable too, Danny. Coffee is my number one priority. But typically, when I have my coffee, that’s after coffee—that’s when I have to poop. So you got it.

Tara Whitty
Because number two is number two.

Tim Villegas
Oh my gosh, what’s so funny? Actually, I was trying to make that joke, but I couldn’t get it out of my brain. So I think, Danny, you just hit the point of mine.

Tara Whitty
But my more insightful priority is to have a day of mindful care for my body.

Tim Villegas
That is a great question.

Tara Whitty
That is a great question.

Tim Villegas
That was fun. All right, I’m going to sign us off, but don’t go anywhere. I’m going to hit stop, and then we can say goodbye. Okay?

Tara Whitty
Wine.

Tim Villegas
Danny and Tara Whitty, thank you so much for being on the Think Inclusive podcast. This was so much fun.

Danny Whitty
Thank you.

Tara Whitty
Thank you. I enjoyed it too.

Danny Whitty
Thanks. I did too.

Tim Villegas
Music. Welcome back, everybody. How was that? That was awesome, right? I loved talking with Danny and Tara. And Danny is absolutely hilarious. Danny, if you’re watching this, the next time I’m in San Diego, we definitely need to hang out. I just want to do a little bit of reflection. Last year, I tried something new called free time. I think that’s what we’re going to call this time right now, but mostly I just want to use this time as a reflection period for the conversation that I had, and let you know some of the things that are on top of mind as we close out this episode.

So I guess we’ll do three things. The first thing that really stuck out to me from my conversation with Danny is just the amount of frustration and outrage that he feels that learners in schools are not getting access to spelling to communicate. I know that there’s some controversy about that in the field of communication. I don’t know how, but we need to get beyond that. Kids are learning to spell when people have assumed that they have an intellectual disability or are not capable of communicating in a particular way—that needs to stop. One of the first things we talk about, as far as having a mindset and an inclusive mindset, is presuming competence. So if you’re asking yourself, “Well, I don’t know if this could be true. I don’t know if this person is saying what they’re saying using the letter board,” the first thing we need to do is presume competence, so you can take that one off the board.

Number two, people like Danny have high support needs, and for some learners like Danny, they’re going to require having a person next to them, whether that’s a communication regulation partner, or regulation in general, to fulfill the things that you need to do in life. But I’ve said this before: for that student, that is their special education, and it also means that we do not need to segregate learners with high support needs into separate classes, where, for the vast majority of the time, there are very low expectations.

Okay, the last thing—what’s the last thing? The last thing is that it takes effort and an investment of time and energy to have a relationship with Danny. Now that’s not a bad thing, but I do want to share the interview that we did. It took a while. We had multiple breaks. I actually was experiencing some technical difficulties, and so were they with their internet, so it was a bit of a challenge. But here’s the thing: it is honestly one of my most favorite interviews, and I’m so glad that we scheduled some time to talk to each other, to try to understand each other. I think there’s a lesson there that even with those who seem to have significant support needs, the more time and energy we put into having relationships with people, the more we will gain from having relationships with all different kinds of people.

Okay, so I think I’m gonna call this segment “three for me and two for you.” I don’t know why that sticks out in my brain, but we’re gonna go with it. Okay, I gave you three things that were on my mind, and now I’m going to give you two things to do.

Number one, I’d love for you to go check out the Spellers movie. I’ve promoted it on our Facebook page before. Definitely got some haters on there, but I believe it is streaming on YouTube right now for free, so I will make sure that is in the show notes. Have an open mind, watch the movie, and then definitely follow up with me, because I’d love to know what you think.

Number two is, go and listen to Danny and Tara’s podcast, All Our Brave Hearts. You can find it wherever you listen to podcasts, and I believe that they have a Substack blog which embeds the podcast, so I will also make sure to have that in the show notes.

Okay, that is it. Jupiter, you want to come? Jupiter, come on.

Come on. Good point. Good point, good point. That’s it for today’s episode of Think Inclusive. Think Inclusive is written, edited, designed, mixed, and mastered by me, Tim Villegas, and it’s a production of the Maryland Coalition for Inclusive Education. Thank you so much to our sponsors for this season, IXL. Make sure to go to the link ixl.com/inclusive to learn more. Original music by Miles Kredich, additional music from Melody. Thank you to everyone who listened or watched this episode, and thank you for Jupiter, who’s laying on my feet for being a very, very good boy. Coming to you from the little library in my house. Thanks for your time and attention and remember, inclusion always works.