S1 Ep006 Communication Access for All in Public Spaces: Understanding Disability Inclusion with Janae Romano, Pt2

Apr 10

This is part 2 of our 2 part conversation with Janae Romano, a nurse and Advocate for Individuals with Complex Communication Needs. She has more than 20 years of experience working with individuals with neurological conditions impacting speech-typical communication. How does disability inclusion happen? We discuss:

Why it is imperative to use a disability inclusion model in kindergarten.
How family financial resources directly impact a disabled child’s access to public education and literacy.
The dangerous form of censorship experienced by people with communication-related disabilities.
What public institutions and businesses can do to improve access for complex communicators.

“In order to have full access to communication, students need to have the ability to use whatever tools they need, in whatever setting they're in, as well as access to learning full literacy, how to read and write. Because if you can learn to read and write, you can say anything. If we just give people four little icons, they can say four little things. That's the main thing that I push for, is for students just to have the same access to education as all the other students in the general ed set setting. It's really, really a necessary shift.”

Kinderpublic Guide to Complex Communication Terminology (Part 2):

BOCES: Adult education program in New York.

Gen-Ed: The general education, mainstream classroom.

Complex Communication: A communication strategy requiring multiple approaches or modalities. Overlapping and older terms may include Total Communication and Multi-Modal Communication.

Disabilty Inclusion: Including people with disabilities in everyday activities and encouraging them to have roles similar to their peers who do not have a disability. This involves more than simply encouraging people; it requires making sure that adequate policies and practices are in effect in a community or organization. From CDC.gov Disability Inclusion | CDC

Right to Education: Individuals with disabilities have a legal right to access public space and to a Free and Appropriate Public Education (FAPE), established by The Americans with Disabilities Act (ADA), the Individuals with Disabilities Education Act (IDEA), and Section 504. However, many individuals with disabilities must fight to access Free and Appropriate Education, and may be denied access through administrative requirements that they first prove their cognitive ability through extensive and expensive testing, or by independently acquiring expensive language supports.

Free and Appropriate Public Education (FAPE):

What’s Covered Under FAPE | Free Appropriate Public Education | Understood

Americans with Disabilities Act (ADA), Individuals with Disabilities Education Act (IDEA), 504:

Disability Law: Which Laws Do What? | Understood

AAC (Augmentative and Alternative Communication):

Augmentative and Alternative Communication (AAC) (asha.org)

AAC Device:A tool or system used to facilitate communication.

Eye Gaze Technology: Communication device that is controlled by eye position.

Communication: an interchange between two or more people.

Non-Speech Communication: Communication that does not primarily rely on hearing and speech.

Non-speaking language: Any language that does not rely primarily on hearing and speech.

Multi-modal communication: Communication that relies on more than one mode of expression, such as AAC devices, gestures, facial expressions.

Bilingualism: Just as the syntax of a spoken language, such as French, is not the same as the syntax of another spoken language, such as English, American Sign Language should not be used within the syntax of a different language, such as English. Complex and multi-modal communication is not the same as promoting the use of “SimCom” (the erroneous belief that you can simultaneously sign and speak a message that is equivalent and grammatically correct in both languages.)

Communication partner: A necessary support person, interpreter, or translator, who is trained in the modes of communication used by the individual they support and that of the dominant environment.

Supports: The assistance or additional education necessary to improve access for a disabled individual.

Motor planning: This important [neurological] skill is key to executing movement. It allows us to know, remember, and perform small steps that make a particular movement or task happen. From understood.org What Is Motor Planning | Understood

Motor demands: The performance of gross and fine motor actions by the body.

Physical Therapy: Referred to in the episode as PT.

Neurotypical: An individual demonstrating typical development and abilities.

Authentic Communication: An autonomous message; an individual communicating exactly what they wanted to say. This is an area of ethical concern in communication access. Communication may not be authentic if select words are restricted or removed from Augmentative and Adaptive Communication strategies, or “hand-over-hand” techniques are used to force an individual to communicate certain messages.

Modeling without Expectation: Modeling communication without expecting repetition or response from the disabled individual.

Transcript

Season 1, Episode 6 (Part 2) : Communication Access for All in Public Spaces: Understanding Disability Inclusion with Janae Romano

Janae Romano, Guest:

Especially when inclusion starts day one, kindergarten, and you have a mix of kids of all abilities in a classroom, that's really formative years. And so those students are less likely to be discriminatory to a student with additional needs later on in school, or later on in life. Partnering people up, building relationships that way, can be way more powerful than we realize. Some of those students later on in life will graduate and become teachers or therapists or administrators. And that's how the change happens slowly over time.

[Sounds of train station fade in to background]

[Rhythmic sounds of train passing]

[Subway chimes arpeggio played on mandolin]

Cevan Castle, Host:

Welcome to ‘Towards a Kinderpublic’, a podcast exploring issues in public space, and ways to design kinder space that better meets our interconnected needs. I’m Cevan Castle, and along with Annie Chen, we are Kinderpublic.

Today’s episode is “Communication Access for All in Public Space: Understanding Disability Inclusion, With Janae Romano Part 2”

This is part 2 of our conversation with Janae, a nurse with more than 20 years of experience working with individuals with neurological conditions that impact their communication abilities. She has extensive training in literacy for individuals with complex communication needs, and has worked and trained with leaders in disability inclusion and the right to education for individuals with disabilities.

If you have not accessed Part 1 of our conversation, we invite you to go back to episode #005 and listen or read there first. A full transcript of that conversation is available on our website.

In this episode, Janae explains how disability inclusion in kindergarten directly impacts inclusion in public space later in life. She explains the benefit we give to all children when we uphold inclusion, and why the neuroplasticity of children makes them uniquely suited to including peers of different abilities.

Individuals with disabilities do have a legal right to access public space, and to a Free and Appropriate Public Education (FAPE). This is established by several pieces of legislation, including The Americans with Disabilities Act (ADA), and the Individuals with Disabilities Education Act (IDEA).

However, individuals with disabilities frequently face other barriers to public space and to access a Free and Appropriate Public Education. They may be denied access through repeated administrative requirements, including: that they prove their cognitive ability through exhausting and expensive testing, which favors speech-typical, hearing-typical, neuro-typical development; that they prove through expensive medical and specialist documentation that they require specific, up-to-date disability supports; and that they enlist expensive legal representation to ensure the supports are made available.

The question we pose in this episode is, what steps can each of us take to promote disability inclusion, and communication access for all in public space?

An extensive set of links to learn more are available on the podcast page of our website, kinderpublic.com, under this episode.

We are grateful to have with us now Janae Romano, an Advocate for Individuals with Complex Communication Needs, to explain more.

Cevan:

When I was navigating difficulties, I shouldn't say was navigating, <laugh> I am navigating difficulties with communication accommodations for my child. And you had so many really supportive ideas to share. One of them I've mentioned already, which is that the principle that all communication is valid.

In your experience, have you found that there are systems or philosophies within communication disability supports that are more accommodating of the individual with a disability, and some that are more ableist and tend to work towards the comfort of the speech-typical, hearing-typical, neuro-typical community? We've touched on this already a bit, but, what is a framework that is centered around the individual with complex communication needs?

Janae Romano:

Well, I do think any of our longstanding systems that we have in place are going to be more geared to the able-bodied individuals. They've been in place a long time, and, even though our understanding has progressed, those systems are very slow to change. And again, it really is dependent on the people in charge, so to speak, who are almost never individuals who have had this experience or maybe have a child who had this experience. So I do find that, you know, our public school systems and even private school systems really struggle to accommodate the communication needs of complex communicators.

Now, that's not everywhere. There are definitely pockets in school districts who are really helping to lead the way in change. But again, it takes time. And I just had a meeting with a team the other week and we were talking about this, because they are working to move their whole district to an inclusion model, versus segregation of special ed.

And, you know, we were talking about how, even though philosophically they're on board, they're like, “yeah, we want to do this,” that it really takes time, to train, teach, and honestly change the heart of the people doing the work. So say for instance, a gen ed teacher who has a student pushing into their gen ed class who has a communication need, in an ideal world that gen ed teacher should know, use, model, all that one individual student's communication throughout the time that they're there. That's really hard and scary for a lot of those gen ed teachers because they really were not trained. Even a lot of our special ed teachers are not trained in these newer modalities as well.

And so, I think a lot of times when people are resistant to this, it comes from their own fear, it comes from their own guilt, perhaps. I've seen that before, because some of these people have been in the teaching world for years. And, my philosophy is once you know better, you do better. Thank you, Maya Angelou. <laugh> But some people, they feel as a threat, you know, to what they've done in the past. And then you have to feel bad that you didn't, you know, provide something for someone else. I work frequently with an organization called Rett University, and their founder Susan Norwell. I love to have people listen to her speak about her journey. Because this is, this is what she does. She lives… breathes… [it], she's been doing it for over 30 years.

And she tells a story about a young woman who was a little girl when she met her, and she had a diagnosis of autism, and so she taught her to read and write using alternative methods. And then, later, that girl was found out- she was misdiagnosed- and she was diagnosed with Rett syndrome, and at the time there wasn't even an attempt to teach children with Rett syndrome how to read or write. They were deemed intellectually disabled, because there was no way to prove that they could understand. And so it's really a great story that she tells, because you can see her humility, immediately she realized like- whoa, I'm working with these other students who have Rett syndrome- but I'm not treating them fairly because of a diagnosis that was written on a piece of paper and a training I had, you know? And so she started realizing if I could teach this girl how to read and write and all this time she really had Rett syndrome, then I could potentially teach, there's that potential there for everybody.

And so that's a term you hear a lot of in the complex communication world. And I won't go into the long history, now, it's “presume competence,” we'll put it that way. There's a little bit different definition, I think, for, like, the everyday person. So a lot of times if I'm talking to maybe someone not in the education field, I'll say, “assume intelligence.” Essentially, it's treat everybody kindly, and with respect, because you don't know what someone else is capable of.

And, I think when you go and look at some of the lived experience, that's the big takeaway for me. It's not hurting anybody for you to assume when I talk to this person that they're understanding everything I say. And if they don't, that’s okay!

But I assume that everybody has the potential to learn, to communicate in some way. Each person, no matter what their abilities, has value in our society.

I think, educationally, but also I see this a lot in the medical field as well, being a nurse, one of the amazing things that has happened as a result of a lot of complex communicators actually getting access to robust communication is that, I see even now young girls advocating for themselves when they're at a doctor's appointment or hospitalized. That in the past just wouldn't be heard of- parents are the ones to do that. And of course parents are still really important. But the value, and really the focus I think, needs to be on teaching robust communication literacy. If you can read and if you can write, you can communicate anything. The systems we have in place fall very short of what my ideals would be. <laugh>

But then also you think of other systems we have in place, just everyday stuff- the dmv, <laugh> going to a museum, or any public spaces…

Cevan:

Yes.

Janae Romano:

…they're made for individuals who use speech, primarily, to communicate. And we have seen minimal advancement in this area. And that is something that I would like to see more of, is public spaces being more accessible to individuals with communication barriers.

Even if it's something simple. So, like, if I go to Walmart pharmacy- I noticed this the other day- Walmart pharmacy, they have a sign if you don't speak English, if English is your, not your first language and you need an interpreter, call this phone number and they provide an interpreter for you.

But how great would it be to have a sign that said, “if you are a complex communicator or you use AAC, we have (some sort of) very simple communication board that would transverse…” because there's lots of different AAC devices and languages within those, but most individuals who have had AAC have all been introduced to some basic symbol-based communications.

So, you know, it is trickier with complex communication because like I said, everything is individualized and everything is nuanced from individual to individual. But I do think we could make strides in that area.

The one area I've seen this happen the most is playgrounds. They will have a playground-themed communication board at the playground.

And so that would be great, to go to a museum, right? Maybe you're at an art museum, and art is such a personal experience. You go to an art museum, you want to explain how that piece of art makes you feel. Or, maybe you hate it, <laugh>, maybe you don't get it… this person sees something I don't see! But wouldn't it be great to have a little symbol-based communication board next to each placard that tells you who the artist was and so forth, where non-speaking individuals could participate in that.

A lot of our complex communicators who use Eye Gaze have become artists in their own right, using their eyes. And so I think personal expression is super, super important. And I'd love, love, love to see that more accessible everywhere.

I do think it really starts with our education system, because unless we can change that to be more inclusive of all communication styles, then the broader society, you know, won't latch onto that.

There's a couple of links that I'll share with you. I think the one has a story from Jo, who tells a story about… <laughing> Jo has Rett syndrome. She's from Canada, and she… she's a spitfire. But she was at an event one time, and she went to order a beer, but she was underage. <laugh> But because she had a communication device, she uses an Eye Gaze AAC device, and she could speak her own thoughts! The bartender was gonna give her that drink! <laughing>

Cevan:

Janae Romano:

You know? <laughing> Because that's the power of authentic communication! One of her companions had to jump in and be like, well, she's not of age to have that. <laughing>

Cevan:

<laughing> We are not advocating underage drinking <laughing> on this episode.

Janae Romano:

No, we are not. But what I am advocating, is, for every person to be able to make bad life choices. <laugh>

Cevan:

Yes…. <laughing> right… and authentic communication….

Janae Romano:

You know…

Cevan:

…Communication necessary to facilitate that. <laughing>

Janae Romano:

Yeah! Like, you know, everybody should have the right to do dumb things and say dumb things, <laughing> and, and get in trouble!

That is a huge, a huge thing, that I see with a lot of the folks that I work with. It's like, “oh, they, you know, we don't wanna put a bad word on their device, or something like that.” But you know what, that is a right! It's a right to say something you shouldn't. And there's gonna be a consequence for that, of course. And that's, I think, just a valuable, important life lesson, <laughing> right?

Cevan:

Yeah! Yeah.

Janae Romano:

But if people are not given the opportunity, they're not gonna learn that lesson.

Cevan:

That’s like a very interesting form of censorship that you're talking about, because, <laughing> those words do have functions for us, biologically and otherwise.

Janae Romano:

They do!

Cevan:

So it's really interesting. It's like almost not giving people the option to say no, or to… again, it comes back to not being able to express dissent.

Janae Romano:

And this is another topic I talk about a lot, because it doesn't get spoken about a lot because people don't like to think about it. But non-speakers are at a significantly higher risk for abuse.

And so the- to me- the way to combat that is communication.

Cevan:

Right! Forceful communication.

Janae Romano:

Yes, yes. “I'm going to tell on you.” Like, I create boards for my folks that I work with, like, “you're mean,” <laugh> You know? <laugh>

I want them to be able to tell me those things about adults.

Cevan:

Yeah.

Janae Romano:

And let them know that it's okay to use those forceful words. In fact, it's really important.

That's one of the things that always bothered me, and even does now, because even though there's more access to communication than there used to be, I still see a lot of, like, restricting of icons on devices, or, you know, limiting page sets so that, you know, we're taking away buttons and all that. But what you're doing is really restricting someone's autonomy. They should be able to say those things.

And I think it's critically important to hold people accountable.

And one of the reasons that I always push inclusion is also for the same purpose. You know, if there's something going on that shouldn't be, if your child is in a room with speaking children, there is a much higher likelihood that that's going to come to light. And I have unfortunately seen cases where, you know, the only thing that the parents had to go on was behavior: “something's wrong, my kid is acting up, I’m not sure…” You know, parents instinctively know that. But then the adults in question are kind of shielded, because their child can't go home and say, “hey, this person did this.”

And I think that that is something really important to consider, for parents, um sure, but also all of us. <laugh> You know, I'm a nurse, I'm a mandated reporter. My husband is a school bus driver and he just had a training on mandatory reporting, and things like that. And so, you know, not being afraid to speak up as an adult, but more importantly, giving everyone the tools to speak up for themselves, is so, so important. And I think until communication is really taken seriously in that light, if for no other reason, that's a reason to <laugh> to give people access to a full, robust communication system. I just feel very, very strongly about that one.

Cevan:

Right, right. Thank you for bringing that up. So I wanted to ask, are there public institutions or public resources that we should focus on for improvements in accommodating complex communication? And are there safety or other urgent factors in these issues? And I feel like you've just touched on that.

Janae Romano:

Yeah, so I kind of just touched on some of those things. I think one thing that would be great to see is, you know, we have some laws in place and it's different from state to state, different state laws, but I would like to see a shift. So currently, say you're having a hard time with, maybe a school district providing necessary services to your complex communicator. There is a process that you can go through, right? You can have meetings, you can try and overcome it that way. You can file state complaints, you can ultimately get a lawyer and due process and go to court and all of those things. And so that's better than it used to be. There weren't always those protections.

But my issue with that is that that is all on the onus of the parent instead of putting the needs of the student first.

So I would like to see the districts <laugh> have to be the ones to prove that. <laugh> Right now, it's the parents have to prove that the student needs X, Y, Z. I would like to have it the other way around where <laugh> the district has to prove that the student doesn't need X, Y, Z. And so I see this a lot of times, there is this kind of loophole, I guess is the best way to put it, that a lot of services are challenged: “well, you know, we only have to provide what's necessary for them to access their education.” I've seen this multiple times with students that I've worked with, and that is absolutely true. But in some cases, the services that are being denied, can literally impact the student's health.

I literally had to say to a team one time, you're saying that this decrease of services isn't your thing because it's a medical need, not an educational need. But my thing is, if my patient isn't, or, if the student isn't here- because the student had complex medical needs as well- if this decrease causes medical issues for them, they're gone.

And it seems like an extreme, dramatic thing to say, but it's the reality for some of these students who have medical complexities. If they're not getting PT in school, their health is at risk. And trying to fit in all these extra PT sessions after school usually is not logistically possible for most families. And so, you know, I think it depends on the people who are in charge <laugh> to sign off on those things. Unfortunately, it comes down to person to person, which could be a great thing too, but conversely, you know, a lot of resistance to providing necessary services is monetary based or, the old, you know, “well, we don't have the resources.“

But legally, that's not an excuse not to provide a necessary service to a student, according to the federal law, disability law.

We have some laws in place that help support the rights of those who are disabled. But I feel that they're highly lacking, and that, um, districts know which families can afford to hire a lawyer and go through that whole process- it's very expensive to do- and who can't. <laughing>

And so I have seen that as a pattern- our system as it is right now- you know, that's not equitable. That's not equitable services.

Cevan:

I guess I just want to make the point again, that we know- complex communication needs- we know what that is. I don't think the public widely knows what it is, and I don't think that we're accommodating it, but it's a known need, right?

Janae Romano:

Mm-hmm. I think that's one of the things that those who who are advocates for inclusion hope to change, because, the results of inclusion are that the speaking children, or the neurotypical children in the gen ed classes, they start to see those with disabilities of all types as equal parts of their community versus inferior to them within the community. And I think that's really important. And so by segregating our students, it gives the impression that they're less than, and we know of course that that's not true.

But it also brings into awareness that there are all these different ways to communicate. And I will say that, especially when inclusion starts like day one, kindergarten, and you have a mix of kids of all abilities in a classroom, that's really formative years. And so those students are less likely to be discriminatory to a student with additional needs later on in school, or later on in life. Because it's normalized and it's just part of what it is.

And I love to see the benefits for all students when we're including everyone together. Because the ones who are really good at figuring out these augmentative forms of communication are the other students, <laugh> the other same age peers. They're not afraid to go in and, like, ask questions. And we even, you know, promote other students having ways to model for their peers who have complex communication needs, partnering people up, all those types of things.

Building relationships that way can be way more powerful than we realize. Some of those students later on in life will graduate and become teachers or therapists or administrators. And that's how the change happens slowly over time. People of position, people who now have exposure and experienced what it is to have a friend who communicates differently, and that friend is just as valuable.

I see this with my own children who, you know, kind of are <laugh> because they've been exposed to this since birth, and so one of their friends who is a complex communicator, during the pandemic in particular, she was struggling with online school. And yet when we would do Zoom sessions with them, and we do science experiments together, and, you know, because my kids have the tools, they're up there on the screen, like using the communication board and all those types of things. It just was like a normal part of our experience together. That's just part of their friendship, that type of communication.

So this friend in particular, sometimes her Apraxia will kick in and she will log out of our meets. And so my boys are like, “oh, she'll be back, you know, when her body is ready.” <laugh>

Cevan:

Oh, how sweet.

Janae Romano:

And so I think watching those interactions, that are kind of untainted… <laugh>

Cevan:

Right!

Janae Romano:

…by the influences of the current system, that's kind of where my hope resides. Because it can be very frustrating to fight systems that are not inclusive.

But I do think we're making headway, <laugh> it's just very slow. And I do hope that if we can even inch towards a more inclusive society at large, but starting in schools, in medical institutions, as part of teacher trainings, I think that we will see a benefit for everyone. Not just our complex communicators, but really everybody, because we have so much that we can contribute to one another. I am endlessly amazed by some of the voices of complex communicators and the things that they accomplish, in the ways that they change people's perceptions, just by being them. <laughing> And that's where the magic is.

Cevan:

What steps can businesses and public facing staff take to improve access to public life for individuals with complex communication needs?

Janae Romano:

I think the first thing is awareness, as you mentioned, a lot of the general public- if you don't know somebody or love somebody who has these types of needs- it's not in the general collective’s consciousness. <laugh> And so bringing that to the forefront is the first thing. I think social media, honestly- I have a love/hate relationship with technology in general. <laugh> Our family is probably one of the last existing families without a cell phone <laugh>. But I do think that there is huge power in technology and in social media. Without technology, we wouldn't have Eye Gaze, and so many of my friends wouldn't be able to tell me all the wonderful things that they tell me. So, I'm not anti-technology or even anti-social media. But I think, when used in the right way, we can start to see more diversity of the world, whether it be culturally or in this realm of disability.

And we start to see people as people versus some preconceived notions, some stereotype in our minds. And so I follow lots and lots of individuals who have those lived experiences, and I love to hear their thoughts, and I read their blogs, and their Instagram accounts, and those types of things. And I share them, share them, share them. I love, um, Special Books for Special Kids is a YouTube channel that is awesome. And they do interviews with people from all walks of life with all sorts of different abilities or challenges, in a very holistic and respectful way. Chris, who runs it, kind of reminds me of, like, the modern day Mr. Rogers. <laugh> His way of being, and the way he explains his interactions. So there's definitely those platforms out there.

I think those of us who love people who have communication needs, the more we share that with others- which is hard sometimes, for me, and I'm not even a parent- <laugh> but those who are parents, I know it's like an emotional, emotional taxing, sometimes to constantly be advocating and explaining. But I do think the more visible this is the better.

And really listening to the voices out there who live it, because I will say, I'm always learning. I think back to like, some of my preconceived notions from when I first started working with Kim, to now, are huge.

And I may not even agree. It's okay to disagree with people with disabilities, fyi, <laugh>.

I do get that like other end of the spectrum. Sometimes people are like, “well, they said it about…” You know, even within the community of individuals who have disabilities, there's a broad spectrum of opinion about some of these things. But I think hearing all of them are really important.

And I know that for me, uh, I've shifted the way I talk, the words that I use are more mindful, and even those ones that I've come to, I'm willing to change again, because it's not really about me. It's about representing a community and their experience. So for instance, I used to say, when speaking about Rett syndrome, I would say, “oh, my friend Kim suffered from Rett syndrome,” and I don't use the word “suffer” anymore.

Especially, since Kim passed, I do a lot of advocacy or awareness campaigns. And I was out at local businesses handing out flyers, and one of the women’s businesses, and she was very well intentioned and sweet, she saw, she said, “oh, that poor thing.” It, like, startled me- because yes, it was a tragedy that she only lived to 28. But she lived such a joyful, vibrant life. She had struggles. But we all have struggles. She had a family who was just unlike <laugh>, anything I had, I personally have experienced, and I learned so much from them as a family as well. And I thought, I don't want people to look at her life in pity. That's not what she was about. If anything, I always say, <laugh> Kim taught me how to be an optimist. I'm a pessimist by nature, I think, or maybe a realist, I would say.

But Kim taught me so much about hope and light and finding joy even when there are struggles and so many deep, profound things. And, I think when we say somebody suffers from a certain condition, that just puts it at a very surface level. So now I change my verbiage to “people living with Rett syndrome,” because that's what they're doing. They're living. Rett syndrome is a part of that, there is no getting around it. And that's okay. They can be proud of that, that ability to do things differently than the rest of us. And there's value in that, and I think that's important to remember and shift in our culture.

I see a lot of parents, and a lot of non-speakers, or disabled folks saying, you know, I don't want to be your inspiration. <laugh> I'm just living my life.

And that's great to have people take note like, “hey, my notion of what this person was capable of obviously is different,” and to be moved by that, that's okay. It's great to celebrate people including other people.

But we also have to walk a fine line there, because this is their life, you know? Their feelings are valid. That's important.

I like to hear the criticisms that they have of the able bodied, the able person's approach or mentality, because it challenges my own preconceived notions, and I think that's where we grow.

Cevan:

Mm-hmm. That's amazing. Thank you. We've covered everything so well, is there anything that you want to add?

Janae Romano:

I just want us to see people. I think that at the end of the day, if you can put connection as the highest value, relationship as the highest value, all those other things come with that. Because if you truly value someone, you want to hear what they have to say. And you will do whatever to make sure they have the opportunity to say that.

You will see a barrier, not as a sentence, a life sentence, but as a challenge to overcome. The families that I know who have children with complex communication needs or physical disabilities, they are the greatest, like… jerry-riggers, <laugh> tinkerers, because they will do anything so that their kid can participate in whatever said activity, or event, or what have you.

And that's because of the relationship and connection.

And so I think if we start there, and then we expand out from there, that's really the heart of what it is to be human. And, that's what it is at the heart of communication. And in order to have full access to communication, students need to have the ability to use whatever tools they need, in whatever setting they're in, as well as access to learning full literacy, how to read and write. Because if you can learn to read and write, you can say anything. If we just give people four little icons, they can say four little things. That's the main thing that I push for, is for students just to have the same access to education as all the other students in the general ed set setting. It's really, really a necessary shift.

In terms of inclusion, and in terms of, honestly, just mindset, being open to learning something new…

Cevan:

Yeah.

Janae Romano:

…stepping outside of a box.

Cevan:

Right.

Janae Romano:

And I know that there are areas like that out there because I have such a vast network of, of friends who, whose children have, um, complex communication needs. So I see there are kids with Rett syndrome…

Cevan:

Yeah.

Janae Romano:

…that are at grade level or above, top of their class, getting scholarships for college, and things like that. So I know it is possible.

My friend Kim was 21 when she was in a BOCES program and her parents had to fight for her to get that program, where there was some sort of learning, not just sitting in front of a TV all day.

Kim basically had been robbed of an education that she had a right to.

It's important. It’s important work.

Cevan:

Yes. I really, really appreciate your time.

Janae Romano:

Thank you so much!

[Sounds only for a few seconds, then fade into background]

Cevan:

Subscribe to Towards a Kinder Public on Apple Podcasts and leave us a rating and a review, we would love your feedback. To share information about issues in public space, and spaces that are doing things right, email podcast@kinderpublic.com.

Links to more information about the guests and topics mentioned, as well as a full transcript of the conversation, are available on the podcast section of our website, kinderpublic.com. Visit our website to learn more about our work.

I’m Cevan Castle, our guest has been Janae Romano, Complex Communication Needs Advocate.

[Sounds]

Cevan:

Thanks for listening, I wish you a good week!

[Sounds fade out]

Mentioned in this episode:

Jo Picard: (Jo’s interview starts at 34 min in)

The Five Moore Minutes Podcast

Playground Communication Boards

Smarty Symbols

Further Reading:

Jordan Christian