Whether you're a parent/family member or an educator (teacher, teacher assistant, administrator, speech and language professional, occupational therapist, psychologist, etc.), THIS topic is so important.
This interview transcript contains controversial content. There are many disparaging opinions out there about supported communication. And I get it. I'm quite a skeptic about many things. However, I personally know people who have found their voices, thus finding hope, using "best practice" strategies mentioned in this interview. It was their start. And now many of them type independently.
My hope is that no matter who you are, you will see the benefits of being open to a variety of augmentative and alternative communication strategies (no matter who your loved one or student is), and the hope that we can provide and receive simply by way of keeping our hearts open, going beyond awareness. May we all presume competence and support the right to communication.
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Hello everyone. And welcome back to Beyond Awareness: Disability Awareness That Matters. Today we're gonna be discussing a topic that is very near and dear to my heart, and that is diversity in communication and the right to communication access. The perfect person to share about this topic in my mind is Darlene Hanson.
Darlene and I go back many years. I believe that we met at an autism conference for the first time, right Darlene? (Darlene: "Probably <Laugh>"). Yeah, and we've stayed in touch. And then when I first attempted supported typing with Joaquin, my brother, I wanted someone I could trust to first, validate the communication that Joaquin and I had experienced together, and also to evaluate Joaquin's communication needs and abilities. And Darlene did this. And she drove all the way to the institution where Joaquin lived at the time. And she spent a couple hours with us, out at a picnic bench, under some trees, in a quiet spot. And she ultimately brought Joaquin and me a remarkably humanizing and hope-filled future. So thank you Darlene, for that extraordinary gift that you gave to us. And it is a gift that keeps on giving.
Darlene Hanson:
You're welcome.
Diana Pastora Carson:
I would love for you to now introduce yourself to our audience, tell us what you do, who you are, what you're passionate about and what your journey has been to getting where you are now in your career and your work.
Darlene Hanson:
Thanks. So I'm Darlene Hanson and I'm a speech and language pathologist. Currently I'm director of communications with a company called Kindred Communication. And we're an online platform and developing an app and everything else for the future. But that's where I am now, but my journey has been always working with people with developmental disabilities. I started in the 80's. So, you know, all of our definitions were kind of different for the most part at that time. Probably because communication devices and systems weren't even, you know, they weren't developed yet. We didn't have the same kind of technology we do now. I hope that's why. <laugh> But so life was very different. But I've always been interested in this population. So anyways, that's been my work all the time. My real goal in, my professional world is to bring communication to the families and to educate the individuals really.
So whether that be the, in the education environment that they live in and they go to school in, or whether it be in their homes and how they live as community members and family members. So that, that's my real niche then, I would say. I've worked, I usually work with people who are non-speaking and and people who have limited communication or limited speech, which is up for grabs as to how you describe that. But in a nutshell, what it means is that the speech that you do have doesn't always work very efficiently for you. So however you wanna call that. And then nowadays, most of the individuals that I work with, and I think that's because of the numbers that we see, have the underlying difference of autism or lifestyle, autistic. However, again, that's another definition that is up for grabs, and go with whatever the individual wants us to, to use, right? So I think that's, that's pretty much, I've worked in the schools. I've worked in private practice. I've been the director of communication departments. I train all over the country. I train via zoom and internet platforms now. So I've worked with people even internationally. So that's me.
Diana Pastora Carson:
Well, so many of us are very appreciative and grateful and so lucky that you're in our world. And the work that you do. Speaking of people who are grateful for your work and what you do, you know, there are still so many people who don't have the benefit of having thinkers like you in the field of speech and language pathology. And so many people who do not have access to communication still. And I know that you've worked with a lot of individuals who you've seen transformation happen in their life. And I know for you, it's just, it's just, you know, an everyday occurrence. But for a lot of us, we don't, we're not aware that this, these possibilities exist for people. Do you have any stories of any people in particular who would be okay with you sharing about how their lives transformed or their life transformed because of being given access to communication that was more efficient than what they had previously?
Darlene Hanson:
Yes, <laugh> yes. Quite a few. But I think, I think I'll start with kind of an overview answer and then I can share one person's story or two or three or whatever. But just in general, we look at, as a society, we look at individuals who don't speak as not speaking because they don't have anything to say or they don't understand what you're talking about anyways. I mean, that's how we as a culture see it. Right? (Diana: "Right.") And that is such a barrier. It's also myth, but even more than myth, it's a problem because it's a barrier. Because we have we on the outside we have this preconceived idea that that's how you measure a person. You measure what classroom they're gonna go to, where their programming is gonna be met. It's this preconceived idea. So we have to change that and we have to look at people as, as communicators and then figure out how does this person communicate and then look towards what's the most efficient means of communication.
So that kind of evolved. I think the biggest pivot for me, and I've always worked in a community like yourself where we surround ourselves with people who are like-minded and who are person-first and believe in respect. And so in the 80s, you know, in the 1980s the individuals that I hang out with, we all thought about individuals with developmental disabilities, whether you could talk or not talk, as people of worth. Right? And we respected people. But in the 90s, when we learned about how important access was in organizing an individual for their communication, that changed for many of us. And we started incorporating the presumption of competence, because what we learned was that presuming competence is not the same as respecting a person. I can respect you for who you are and still think you have limitations that I know are limitations. Right. And I respect you for them. It's okay. I still like you. Right? But when I presume competence, I don't have any limitations in my head.
Diana Pastora Carson:
Right.
Darlene Hanson:
I think we're having this experience together. Let's see what you got out of it. I'm interested in knowing. You know, so that's a, that's different. And of course my, you know, my oldest story is when in the early 90s, when I learned about facilitated communication and I learned about it kind of remotely in a phone call and a friend and a friend, you know, kind of a thing, and ended up connecting with Dr. Anne Donnellan, who you know, and she kind of explained a little bit about it over the phone for us. But we worked with a girl that was 13 at the time. Her name was Susie. And she was on my caseload for years. And as a speech pathologist in the schools, and we were hoping that she could, I mean, her goal, two goals that fit into the story are one was her communication symbol goal. And that was to develop an understanding of how a line drawing could represent an object. That was the goal. I mean, that's not how it was worded, but that was the intent of the goal. We knew she knew what objects were, but we didn't see that she knew what line drawings were. So we needed to teach her that. That an object could be represented as a line drawing, like now we call them PECS. That was our thinking.So that was a goal.
The second goal was that for her inclusion, because her system, now we would say was so dysregulated, at the time we called it behaviors. Her system was so dysregulated that her inclusion goal, which this one makes me chuckle with this stupidity of us, was that she would be able to walk to the classroom that she could possibly join someday. <Laugh> without getting dysregulated. That was a goal. I mean, again, you just kind of go, wow, we didn't know better. Right? We didn't know different. And so this is a very progressive family, and those were progressive goals for her at the time. 13 years old, we learn about facilitated communication. We bring it to her. Within three months, we understood that she knew how to spell words already, and that we could start teaching her how to communicate with us using this spelling system that we also understood.
And she went on to graduate high school. She, I forget what her SAT score was well higher than mine at the time. I think it was high for that time. I think it was like 1620, or something like that. And she has an amazing IQ. And she finished high school with a 4.2 grade point average. And she was still very much living with her autism and her dysregulation issues, but she managed, you know, she conquered them when she needed to, got the work done, got the grades. She earned every penny of 'em <laugh>, went on to college and has a bachelor's in, I think it's in, I always mess it up. I think it's in Latin American History or something like that.
Diana Pastora Carson:
Wow.
Darlene Hanson:
Travels the world. You know, so literacy allowed her to go to college and to get a diploma. She wouldn't have been able to do that with the line drawings I was trying to hope that she would get the understanding of.
Diana Pastora Carson:
Yeah. Well, how, so if you're a teacher, you know, either a general ed teacher who has a child who is non-speaking in your class, or if you are a special education teacher who ideally would be collaborating with a speech and language pathologist in your school or school district, or an administrator who knows that you have students on campus with minimal speaking abilities, where do you go to learn about how... How did you make that jump from line drawings to actual communication, actual presumption of competence and, and actual literacy? What resources are there? I know you mentioned Dr. Anne Donnellan, you know, you've, but how did you get personally make that leap over to that? It's a huge shift, Darlene.
Darlene Hanson:
It's a paradigm shift. It's a, it is a huge shift and we call them the aha moment. You know, and so like, parents will often say, well, I want you to go and teach the school staff how my son or daughter communicates this way, you know? And I say, well, I can teach them the basic elements, the principles, the research that goes behind it, all the mechanics of it, but only your child can A) give them that aha moment and B) teach them how it works for them. Because it's a, it involves, I mean, all communication involves a communication partner that, you know, there's always a sender or receiver. Right? And so if, if I'm talking to you at a cocktail party and you're not attending to me or listening to me as my communication partner, then I will figure out that you don't wanna talk to me and I'll walk away.
Darlene Hanson:
Right? That, I mean, always there's a two way street. But some people are dependent on their communication partners in order to express themselves as well. And so when you have the access to a communication partner, then that person supports you to say what you are thinking, okay, that's the big difference. It's not, we're not wanting, and you shouldn't be, manipulating the person to say what I want them to say. Like one common goal will be copy typing. Okay. Because oftentimes, I get called in because I'm working with someone who has literacy skills. Right? And so the team will say, well, we're working on copy typing. Okay, but copy typing is not communication. It's motor planning to copy.
Diana Pastora Carson:
Right.
Darlene Hanson:
And that's nifty and that's could be useful in some situations and great, but it isn't communication. So they have to be separate. And I have to, we want the students and the the staff to be able to communicate together, not to just involve themselves in an activity together. So we have to, I think that's the biggest deal is getting across to those teams that we're presenting to you, a person here who is a student in your school, and this is gonna be fun for you cuz you're now gonna learn as a teacher. And you're gonna see as an administrator that this student is able to participate in whatever fashion they can participate in. Not everybody has literacy skills, so that's okay. But they, a teacher wants to know how the student learned and what the student learned from what they did. (Diana: Mm-hmm <affirmative> ) right? (Diana: Mm-Hmm <affirmative>). And if, if you're pulling them away and doing something separate, then as a teacher, you start to think less of that student. They're not really your student. Right?
Diana Pastora Carson:
Right.
Darlene Hanson:
And, and because you cuz teachers are, they wanna teach! <Laugh>
Diana Pastora Carson:
Right.
Darlene Hanson:
You know? And so I think as an administrator, you have to have that aha moment. And as a teacher, you have to have that aha moment that no, I wanna know that student right there. And I wanna know that he understood my lesson on butterflies or George Washington or you know, math or Charlotte's Web, whatever the case may be. Yeah. So it's hard to, it's hard to, it's only the students I think, and our job as speech and language people or special ed support people is to help that student show what they know. That's how I see it.
Diana Pastora Carson:
Yeah. You know, that's so, so good and so important. And I think that that's key for sure. You know, the students are the ones that are teaching us, the adults who should know better and often don't, and often are trained incorrectly or, you know, given these professional parameters by organizations that are grounded in outdated ways of thinking. And you know, it's, it's not only to know what students learned academically in our classrooms, but I think as a teacher, I also just wanna know that all this effort that I'm putting into, including this child, I wanna make sure this child knows that they belong. I wanna make sure that this child, you know, whether they're, I'm always going to presume that they're competent, and I'm gonna presume that they're soaking it up, and when their body is ready and when they can regulate being able to express accurately that they understood or that they want to share something about that, that they will there's, it's kind of like Anne Donnellan and Martha Leary say in their book Movement Differences and Diversity in Autism and Intellectual Disabilities. It's, it's like a dance, you know. We have to be in this dance with our students and it takes relationship. It takes trust. It takes acknowledgement of the other person's humanity. And I think that so often we forget that, you know. As professionals in a classroom or in our therapies, that it really should be grounded in relationship. And then once we establish that, we can move on to learning more about the academic context.
Darlene Hanson:
Definitely. And that's just, and again, that's a human thing, right?
Diana Pastora Carson:
Yeah. Yeah.
Darlene Hanson:
And yet, when we have students with special needs this, or special IEPs, whatever you wanna think about it as we forget the human part. So often I know you're all about that. But as a human, you have to, you wanna have a relationship with a person before you start sharing yourself. Right? (Diana: Right.) And yet we'll say, okay, you need to be, we're gonna get you this support person. This paraprofessional's gonna come in on Tuesday, start with you at 8:00 AM. And you'll go to class at 9:00 AM with that person and start doing all the work without any background information, training, or time to develop that relationship.
Diana Pastora Carson:
Yeah.
Darlene Hanson:
And who would do that well?
Diana Pastora Carson:
Yeah.
Darlene Hanson:
You know, that's even if you're not a complicated person. Then you get someone with complex communication needs. Now the two of them are sinking. Right? We have to figure...I don't even know that I have the answer. I don't know...I know that relationship is first. I don't know how we, in our current way that we look at public education, have a design that allows that to happen. You know, people get their job assignments and then the next day they're in their job assignments, and the students have to start school, and there's no funding for ahead of time training and
Diana Pastora Carson:
No!
Darlene Hanson:
It, it just, it kind of, it, it doesn't work.
Diana Pastora Carson:
Right. Yeah. You sound like you've been there a few times.
Darlene Hanson:
Yeah. <laugh>.
Diana Pastora Carson:
Yeah, me too. Me too. Yeah. And it's our students who are the ones that aren't you know, receiving the access they need because of our inadequacies as a system.
Darlene Hanson:
Yep.
Diana Pastora Carson:
So what about people who are in the profession who, you know, there's different types of communication...you know, some people may not have literacy as a foundation, and maybe PECS or picture exchange communication system is what they need, or tangible objects is what they need to start that communication, or a yes/no board, you know, that vocalizes yes and no on an app, on a smartphone. There's all kinds of different ways. Can you share some of the different options for communication and then, you know, I know that supported typing or what has been termed facilitated communication is something that can be controversial at times. And I wanna know what you would say to people who will not go there, you know, at this time in their professional journey.
Darlene Hanson:
So just in terms of what are some kind of strategies and equipment and tools you can use and that there's all kinds. First of all, you know, whatever I say is only part of remember that.
Diana Pastora Carson:
Right.
Darlene Hanson:
So feel free to Google your idea because there's probably something out there. Okay? That actually meets your need. That's the most important thing to know is that there's so much out there to meet your needs at this time. So what you really wanna do is you wanna identify for that individual, what do they, how, what can they access? What symbol system do they understand? How do I need to present that so that they can access it? And then go for it. We have this myth. I think this is a myth as well, that I somehow, as a speech and language person or a school teacher person or a psychologist person can identify what limited vocabulary you understand, <laugh> and then that's all you need in your communication system. So we have students sometimes who are going to inclusion, for example, or should be going to inclusion, and maybe it's called integration or mainstreaming, or, you know, some kind of modified version, and with a board, a communication board, that maybe has four to six words on it, as if that person only knows four to six words, and then they can't actually participate in the curriculum because those four to six words that they have don't come up very often. <Laugh> So you wanna know, most importantly, you wanna know what is the display that the person can handle? What's the symbol that, is it an object? Is it a line drawing? Is it a photo? Is it a letter, a word? So figure that out. And then how do I present it to them? Do I need to present it two on a page? Four on a page? Six on a page? 36 on a page? 64 on a page? What can they handle? Now an assessment can tell you all of that. And once that's done, you start putting the vocabulary in.
You don't have to like, decide what vocabulary goes in ahead of time for the assessment part. You just need to know what the display is gonna look like. If he's learning about butterflies, that's the vocabulary that's going in that display. Yeah. If he's playing on the playground, that's the vocabulary that needs to go on the display. Okay? So in terms of what equipment there is, iPads are awesome, of courseThey have voice output typically, you know, I mean, it should on an app, have a voice output. There's all kinds of apps out there. The top ones are typically Touch Chat, Pro Lo Quo to Go, Lamp. These are things that you can look up and see as an app. Again, you want an assessment to figure out which one actually works for you. So you can use iPads.
I personally love a whiteboard. I think all paraprofessionals and teachers, support people, should have a whiteboard around <laugh> because you can create a display based on that criteria of what that person can handle, unless they have an object communication system, of course. But now it may require you to learn and bone up on your drawing skills, but you can draw out three vocabularies and put circles around each one and, and then offer choices if you needed to, right? And so because you don't wanna get caught up in the moment of where you say, well, he can't really do that lesson because he doesn't have the vocabulary in his system. That's a bad situation to be in, right? That's on us.
Diana Pastora Carson:
Right. Or the copy machine was broken that day.
Darlene Hanson:
Right. You know, or the device was broken that day. You know, you gotta have both, you gotta have backups, right? (Diana: Yes.) So you wanna, it's a big deal. This is a big deal. Communication's a very big deal. It's not, don't minimize it at all. But once you have that figured out, then you're going to, now there's a shift in the past five years, I would say it's five years. But I'm no good on time, especially with COVID. So could be longer or shorter. I dunno <laugh> but <laugh> I think it's been about five years that we've been talking about core vocabulary versus fringe vocabulary. Those are two really important words for people to learn about core vocabulary are words that get you, I say, more mileage. So like "go" and "want" and "more" and "jump" and "eat" and these words that you can pair with something else and change the message.
Right? So the fringe vocabulary are more like the nouns, french fries, hamburgers, bathroom chair, home bus. Okay? So we tend historically to teach the fringe vocabulary, to focus on fringe vocabulary. But how many times do you, if you say home, what's that gonna get you? Because they're gonna say, "Oh, you're gonna home at 2:30," or they're gonna say, "What did you do at home?" Maybe they'll say that. They'll usually tell you what time you're going home if you say home. <Laugh> But if you say "Go home," then they can answer that question. But if you say Mom's at home," they could say, "Oh, did you wanna tell me something about mom? Something happened with mom at home?" Right? It's giving you more information. So these, these core words, or "eat home." "Oh, did you wanna eat at home today?"
Did you wanna tell me about last night?" You can start joining into their thoughts, right? Because you have more information. So core vocabulary is where you focus in fringe vocabulary is, is there, right. But if you use it, they're gonna learn it. The other thing, I think that I wanna finish this up and I'll do the other question, is that this is a new way of thinking. That's why I wanna bring it up. Is that we are supposed to, if you have an AAC user of any kind, PECS, iPads typing, anything, right, we are supposed to do and use the system as well, as the communication partners. Okay. So we used to think of that as it was always testing the individual. "Hey, Show me bus. Where's the bus?" And then they'd point to the bus picture, right? That's not how you teach it. You teach it as: You say "time" and you press the time button. "Go." "Bus." Or "go bus." You press those buttons on the device as you're talking about it with the individual, with the student.
Diana Pastora Carson:
That makes so much sense.
Darlene Hanson:
It totally parallels how we teach spoken language to typically-developing speaking children, right? And yet we created this whole different system. It's a big aha moment. So there's things you can look up on the internet. There's lots of YouTubes on modeling use of AAC. That's what you wanna look up.
Diana Pastora Carson:
Modeling use of AAC.
Darlene Hanson:
And you wanna learn how to do that. And if people are still asking students to find the vocabulary word, to measure their ability to use it, they're doing it wrong.
Diana Pastora Carson:
Okay. Okay. Very good. Very good to know. Thank you. That's so valuable, Darlene. Thank you. Okay. And so if somebody is in a, you know, they feel strongly about supported typing, you know, there's a lot of different, different perspectives around this, and reasons for some people to doubt it. So what would you say to people who have been, you know, slapped on the hand for even bringing it up, and others who may never have even gotten to a point of bringing it up because it's just such a taboo and contentious subject.
Darlene Hanson:
Well, yes. I have been there because I've been in this since the beginning, right? So I'll break it down for you. There's three basic or three most common strategies that people are learning. One is facilitated communication. That one is the one that we started using in the 90s. Okay? Then there's rapid prompting method. And that is developed by Soma. And I'm sorry, but I can't say Soma's last name. She's a woman from India. It's a very long, last name. So Soma, for RPM, rapid prompting method. And then the third is spelling to communicate. It's usually called S to C. And that is Elizabeth Vosseller, and she's in Virginia, I believe. So those are the three strategies. Now, when we started doing facilitated communication, that's a, it's a support, facilitated communication is a support. It's not a, it's not a language of its own. It's, we're just supporting you to access the display, whatever that might be.
And what we found is that it could be letters. We never thought that this individual that we're working with perhaps understood letters, but sometimes they do. And so when they do, that's what we use for as a symbol system. But we have to provide support and it's broken down for us in FC. I do facilitate communication in three components. And that is physical support, communication support, and emotional support. And we look at all three of those pieces and we describe how that impacts the person and what I need to do to support them so that they can access the display. Okay. Now the RPM, rapid prompting method, has a different way of defining itself. A lot of it is through sensory channels and things, and I don't do rapid prompting method. So I'm not gonna tell you the definition of it. But not because it's a secret but because I don't wanna make it wrong.
So look that one up <laugh> okay? And then spelling to communicate again, look that one up, if you're interested in it, or if you know about there's all kinds of people writing books where these different kinds of methods come out. But they're all strategies. Okay, they don't imply if someone says, oh, he uses to qualitative communication to me, I'm gonna say, what does that look like? Because it could be that he could now access his PECS book <laugh> right? Or it could be that he could access 26 letters. I don't know. That's not part of the strategy. The strategy is access. All right? The outcome is not part of the strategy. That's the individual. So you need to ask, "and what does that look like?" Right? We all have training methods. You should use best practice. All right. And learn how to do it from a person who is identified as a person who understands best practice. Now ASHA, which is the American Speech and Hearing Association, their policy on, statements on those strategies of facilitate communication and rapid prompting method have had the greatest impact, I think on access to this communication. The American Psychological Association, APA, they've also had position statements on these things, but
Diana Pastora Carson:
Against, against, I wanted to make that clear.
Darlene Hanson:
Against. Both those organizations are against the use of the strategy. And so ASHA's is the, is the most current, like updated version of their opposition. Personally, I think their opposition or their position statement and the opposition that they have in it, is biased. It's incomplete research. And I think that it was done on purpose. I'll just say that to meet their agenda and, but most, and that's just my opinion, but more important than that, they need to know, and speech and language people need to know who are waving that position statement and meaning saying, I can't do it because of you are denying access to communication. And that is an ADA right.
Diana Pastora Carson:
Yes. Yes.
Darlene Hanson:
That's not an... ASHA doesn't get to say.
Diana Pastora Carson:
Right. Right.
Darlene Hanson:
You know, so we, as a society need to figure out how to fix that problem. If you don't understand the strategy, please don't get involved in it until you do. But to deny access to communication because you don't understand it is an ADA issue, really. It's a civil right issue.
Diana Pastora Carson:
Yes. Thank you.
Darlene Hanson:
And I think that there's an awful lot of people who use any one of these three strategies who are coming up the back road here, to the gate to say, "Fine, I'll take you on." <Laugh>
Diana Pastora Carson:
Yeah. Yeah, you're wrong. And now, you know, and so many of them are now able to type independently, completely independently, and nobody's touching them in some cases. And so what do you say? They required full physical support at one point. And even some who one day they require physical support because they're more dysregulated that day because of emotional issues. And then on another day they can completely type independently.
Darlene Hanson:
Exactly.
Diana Pastora Carson:
And so people, I think that people who've been, you know, inundated with that information from ASHA, from the American Psychological Association would benefit to look into the writings of autistic people or people who have who communicate in these different ways, using different strategies and hear them. Listen, listen to the people. And that, that is what is going to make a difference in making sure, ensuring access for the people that you went into this field to serve in the first place.
Darlene Hanson:
Exactly. Yeah. It's mind blowing to me. I don't understand how I, as a speech and language person who went in the field to help people learn how to communicate, I mean, that's what we do for a living, would sit there saying I'm not gonna help you learn how to communicate.
Diana Pastora Carson:
Yeah.
Darlene Hanson:
I don't wanna see you as a communicator. And so I know that people think that's not what they're saying. They think that what we're doing is manipulation of the individual, but that doesn't make any sense. How can I be if I'm not touching the person? I mean, I don't know how that makes sense if they know how that makes sense, then they should explain that. But if I'm not touching the person, even if I'm holding the board up for you, I'm not catching your hand before it goes to the right letter. That would be impossible to do for a whole conversation. Maybe for one letter or two, but not a whole conversation. So I'm holding the board still. It moves because people touch it. Okay. They communicate whatever their message is. And then that's it. If I had taught the individual that they're thinking of can't do it how to do that trick, wouldn't that be amazing? Mm-Hmm <affirmative> Right? Yeah. It's not a trick. It's a support. And the person worked really hard to get to that level of independence.
Diana Pastora Carson:
Right.
Darlene Hanson:
And the only thing, and the strategy that helped them, that they worked through, are the ones that ASHA and the APA people are saying, you're not allowed to use as professionals.
Diana Pastora Carson:
Right.
Darlene Hanson:
Those are strategies. So people will say, oh no, I don't have a problem with people who type independently, well, how are they gonna get there if you don't use the strategy? Like if you had another strategy, that'd be great, but you don't.
Diana Pastora Carson:
Right.
Darlene Hanson:
So use this one, it worked.
Diana Pastora Carson:
Right. You know, Joaquin, my brother didn't have effective, reliable communication for the first 40 plus years of his life. And so now later in life, we do find ourselves having to provide more physical support for him. But as a communication partner, me personally, I can feel when he is personally pushing towards that letter. And I'll even tell him, you know, if he's having an off day and he is not really participating. And I feel that I was the one I'm like, come on Joaquin. That was me. Come on, you do it. You know? And I don't know that that's, that's the way I'm supposed to be doing it, but I know the difference. And because I care about the integrity of his communication, I make sure that he understands that I care about the integrity of his communication and that I'm being a communication partner who is responsible and honest, you know? Right. And that's so important.
Darlene Hanson:
And all three of these strategies, just so people know, have protocols for training under best practice. So if you want to learn more about it, connect with like for facilitated communication, you would connect with the Wellspring Guild or Syracuse University's Education Department. I can't remember what they call it now, but it's at Syracuse University. It's the education department. If you wanna know the way you're supposed to use Rapid Prompting Method, you connect with the Halo Foundation, I think it's called. But it's Soma's group, right? And if you wanna know about Spelling to Communicate, you connect with Elizabeth Vosseller at Growing Kids. I'm gonna, I should have looked these names up. I'm sorry, everyone.
Diana Pastora Carson:
That's okay. We can, we can put them in the show notes.
Darlene Hanson:
Yeah, you'll find them. So, so do your part and learn how to do it. Right. It's available. It doesn't have to be kooky stuff. It's just, it's just that it challenges that society view that we have about individuals who are sometimes, well, who are non-speaking and then sometimes their bodies are doing some funky things, you know?
Diana Pastora Carson:
Well, that's part of human diversity. Right?
Darlene Hanson:
Exactly. But we have an explanation for some, for most of this stuff. So just learn more about it, you know? And then how ASHA and APA are gonna resolve this for themselves, I don't know. But it's a violation of civil rights.
Diana Pastora Carson:
Yes. Thank you so much, Darlene. It is about having access to communication. And like you said, it's a big, big deal to have communication in your life. I want one more, one more question really quick. If you could say something to students who may not be speaking or able to communicate reliably at this time in their lives, what would you say to them?
Darlene Hanson:
Well, I say this all the time to them. And I think that one thing for all of us to know is that I just talk to people as I talk to everyone. I wouldn't say it any different than I'm gonna say it. Okay. This is how I talk to anybody. And I would say, I wanna know from you what you're thinking, and I wanna support you, however you need to be supported so that I can know that. I wanna get to know you. I wanna hear from you, you have a voice. And I wanna hear from you. I expect you to take your turn and be a part of these conversations with us. And that you're smart and you can learn things. I don't know what you know, but I want you to show me what, you know. I mean, that's pretty, after that, it just becomes more customized as to the individual, but really it's just about getting, I wanna know the person, I wanna know the student, I wanna know what they got outta that activity. And everybody's gonna be different, but it doesn't matter. Whatever you did is what you did, right.
Diana Pastora Carson:
Darlene, how refreshing that is to hear you. You're not talking baby talk. And you're speaking to the person as if they understand, you're presuming competence. And what's really overwhelmingly touching about that is that sometimes for that individual that you're speaking to, that will be the first time anybody has spoken to them like that.
Darlene Hanson:
Yeah. There's so many times that I meet with families that after being with them for 30, 40 minutes and working diligently on whatever, you know, going through all kinds of different options here to figure out access and language and all of that, and we take a little break and then I just chat with the family. And I'd say eight outta 10 times, the family will say, you know, he has a goal that he'll stay on task for three minutes. And he just sat with me for 30, 40 minutes. You know, and their remarks are he's just, he's listening to you. She's just, she's just looking at you and listening. I've never seen her do that for anyone, and so I don't know these people, so I don't know any different. Right? But then at the end of the meeting, their family's describing a whole different person than I just had an experience with.
Diana Pastora Carson:
Completely, completely. (Darlene: "So That matters.") Yeah. It really does. It makes a difference. The energy there, the belief in that person. I remember that day that you came out to Fairview to assess Joaquin and type with him for the first time, other than me, somebody to type with him. And I remember he was so still, it was just beautiful. He was so still, and kept walking back to you. He couldn't sit. He was standing and kept coming back to you with his arm so that you would support him in typing to the next letter. And the next one. And I was just sobbing behind, you know, I was filming it and I was sobbing and you could hear the snot cuz I was just all welling up inside of me. And I remember as you drove away, I was walking with him and you were driving by and you honked the horn. And I said, there goes, Darlene, did you wanna say goodbye? And he does have the ability to say goodbye, but that day, and usually it would be "bye" just very, you know, monotone, but he yelled out "byyyyyyyyyyyye!"
Diana Pastora Carson:
And he held it. You know, it had an impact, not only on his heart and his energy to be able to stay focused for that long, but also his vocal cords, or whatever, you know.
Darlene Hanson:
His intent, it was real.
Diana Pastora Carson:
It was so real. It was so real. What you do, Darlene, makes a huge difference for so many people. And I just appreciate you being here with us today, sharing your wealth of knowledge and passion and for the work that you do.
Darlene Hanson:
Thank you for having me. I do love to share. <Laugh>
******
This was an interview transcript of my podcast: Beyond Awareness: Disability Awareness That Matters, Episode #17, The Right to Communication, my interview with Darlene Hanson. To go directly to the podcast episode and show notes with links to resources mentioned, click here.
This podcast is 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. To listen to other podcast episodes, you can begin here.
Click here for your free Beyond Awareness resource called the 5 Keys to Going Beyond Awareness.
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.
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To learn more about me and my journey to inclusion with my amazing brother, Joaquin Carson, watch my TEDx Talk here.
