Today we celebrate our shared achievements. I know something about shared achievements because I am affected by a form of autism
that doesn't allow me to speak.
Elizabeth Bunker blew the crowd away with her valedictorian speech at Rawlings College.
Beau often goes viral educating people about autism and apraxia from the shores of Hawaii.
Shannen, you were not just beautiful. You were kind, patient, and smart. A real triple threat.
It took him four nights to write that speech for his dad's wedding to his new wife. It went viral and got nine million views.
There are millions of non-speakers in the United States alone.
And my goal is that every single one of them at least has the option of learning to spell or type to communicate.
When families come to you and say my child is spelling or typing to communicate, that is the evidence.
That the spelling and typing to communicate is real.
We don't need a 20-year-long, one million dollar study that says this is a real thing.
You can observe a speller doing it and you know that it's working.
We have non-speakers who are being denied access to letterboards and keyboards because we're being told that these things are not evidence-based.
There was a time when sign language was debunked as being not authentically the deaf person's communication.
A-N-R-N-E.
Because non-speakers learn nothing in school, teachers are shocked at how smart we really are.
Something like that.
Non-speakers today are being erroneously labeled as intellectually disabled because they don't have speech.
Sometimes it is the people no one imagines anything of.
They just need a communication method that doesn't involve fine motor muscles.
Who do the things no one can imagine.
That's what spelling does by using the gross motor of the shoulder of reaching towards a keyboard or a letterboard.
After 11 years of doing this and working with over a thousand non-speakers, there hasn't been a single student yet
who could move their arm that couldn't get to a board that has the full 26-letter alphabet on it and spell on that board.
People might think it's unusual that someone's ex-wife would help their son write this speech for the new crowd in the wedding.
Those 9 million viral views, I relish those because it means that my son has been hurt.
I would like to see non-speakers have the freedom to choose for themselves what methodology they want to use to express themselves.
It feels like a human right to make that decision.
When they can communicate, finally, people hinge on every word that they have to say.
Let the revolution begin.
Well, it's my honor and pleasure to be joined by some of the stars of the documentary Spellers.
I'm joined right now by Elizabeth, who is also on the Interagency Autism Coordinating Committee, which is a huge honor.
She's one of the autistic representatives now on that committee for Robert Kennedy Jr.'s HHS, which is just a phenomenal thing to see.
She will be helped by Ginny, who will be reading some of the things that she types out as we have this conversation.
Of course, I'm joined by Dawn Marie, who is the Executive Director of Spellers' Freedom Foundation.
So, to begin with, what is the success of the documentary?
I know that it really introduced this idea to the world.
We were happy to be a part of it, but have you seen a growth in the amount of people that are using this technique?
Absolutely, and launching the documentary here on the high wire was a huge kickstart to letting the world at large know that non-speakers are in there.
Because a lot of parents didn't know that.
That was JB's intent behind making the documentary.
He was like, why did I have to hear about this from another parent?
This should be in the schools.
This should be in public media.
Hence came the documentary, and thousands of non-speakers have actually started typing and spelling to communicate since.
Which I think is part of what's going on now, is we've hit a little bit of a critical mass that it's no longer this thing that everyone was ignoring or happening off on the side.
There's now thousands of spellers or typers around the world, and people are noticing.
And they're asking for things, and they're asking for support from state funding sources and whatnot.
And it's getting a lot of attention.
Well, it's also needed to get into education, right?
And to get into universities and schools, they're going to need, they have this ability, the school has to be able to work with that technique.
Correct, absolutely.
Elizabeth's typing her answer right now, and I just also want to say that Elizabeth did give us an opening statement that I'd love to hear.
So Elizabeth typed, there are tens of thousands of us, we are a force of nature.
You sure are.
It's such an incredible miracle.
I did skip your opening statement, Elizabeth, so let's listen to that.
Del, thank you for having us.
Three years ago, Highwire showed the Speller's Movie and helped us launch a revolution for non-speaker rights.
Since that time, we have grown to tens of thousands of non-speakers around the world who spell and type to communicate.
We have become a force for change and now the corporate interests who make money on keeping us disabled have infiltrated disability offices across the country to silence us.
They want to keep giving us ABA and speech therapy for thousands of hours even when it is not working for us.
They say our communication must be validated and that is illegal.
The Americans with Disabilities Act gives disabled people the right to communicate in any way we choose.
We have a bill in New York that affirms this right and the State Disability Office listened to the corporate interests and amended the bill to take away our rights.
But we fought back and got the amended bill set aside.
Now we need your help to restore the original New York communication bill of rights.
This discrimination is happening across the country including California and Massachusetts.
It will come to your state too if we don't stop it in New York.
Families need choice and the freedom to help their children learn and grow.
Communication is a human right.
Now Elizabeth was valedictorian in her school which shows just how successful you can be using this ability to communicate.
And so you know this story I actually I said yesterday as I was watching your promotion.
I let all of my F-bombs go before I got into the show because this is why I do what I do.
It's so infuriating but it happens in every part of medicine.
When I you know I started my career on the daytime talk show The Doctors and people would say what did you learn doing that show.
And I said that the slowest moving animal is the evolution of medicine and science.
That every time I found someone that was really cutting edge really taking things to another level whether it was a surgery or a technique or being less invasive.
Not only were they not those ideas not being adopted by their peers.
They found themselves in lawsuits.
They found their licenses under review.
There's just this thing that change comes so slowly and this sounds like that exact story.
So you know you say that there's I guess financial interest.
There's a whole world now that makes a lot of money off of ABA therapy.
Could you help me understand the difference between ABA and spellers a little bit.
I mean I see there's a potential for an amazing partnership there right.
I wish there wasn't a divide between ABA and spelling and typing.
They because they are so trained in like for instance breaking down a task into its minute motor steps.
And if you think about what it takes for a non-speaker to learn to type.
They have to learn how to coordinate their vision and moving their eyes with their hand to accurately get to letters.
Because until they're accurate they're not spelling anything right.
They're not communicating that way.
So there's this whole stage in acquisition when they're learning to type and spell where we're just teaching it's like teaching baseball.
We're teaching them to get their eye on the ball and their and their swing the bat and make contact.
And ABA providers could be really good at that right.
What's inverse though is that in that field there tends to be a presumption of incompetence.
And that they don't believe that non-speakers are intellectually in there.
It's sort of like the cart before the horse or they're letting the outsides dictate what they think is going on on the inside.
And that's the mismatch.
So until they're willing to suspend that old belief and say look it's a motor planning disorder right.
Not an intellectual disability.
It has nothing to do with how their brain is functioning.
It has to do with whether their brain can control their body's movements.
Elizabeth started typing at five years old.
So she's very proficient at it now.
But it didn't look like this when she was five years old right.
So there's stages that you have to go through as a new type or a speller.
And even the documentary just showed everybody at the finished stage.
But there's this acquisition phase.
And I think that would be nice if the ABA industry would be willing to collaborate with us
on let's use this billion dollar industry for the greater good of non-speakers.
Elizabeth.
Yeah, Elizabeth typed.
We need teachers and therapists to presume competence.
We are capable human beings.
Wow.
Thank you Jenny and Priscival for helping us communicate what Elizabeth is communicating to us.
I can't imagine what it's like to you know.
And so just so I can understand this if I remember correctly.
Really the thought in spellers is that there's been an interruption of fine motor skills.
Correct.
Things that affect your tongue or even writing.
But that what you've looked at is if we took gross motor skills, larger muscle movements
and pointed at a letter board that they're able to make that communication easier.
And so that they can show you their intellectual ability by being given an avenue through their gross motor skills.
Yes.
But realize too that like IQ tests or any standardized test requires proficient motor skills, right?
I got to point to the right flash card or I have to put the ball in the cup.
Like even those tests that are designed, these standardized exams designed to show intellect
fail our non-speakers, right?
Right.
Because no one's teaching them the motor stuff.
Like no one's teaching them in early intervention.
If we took those 40 hours a week of ABA and we worked on motor planning.
Like how do you learn to do all these sequenced activities with your body so that your brain can control your body?
The outcomes would be amazing, right?
More autonomy, more agency, more communication, all the things because that's the core deficit.
But we didn't really know that.
Like I mean this is maybe 10, 15 years.
Yeah.
You know that it's more mainstream that people know.
Before that we just, we didn't know, right?
Yeah.
I remember one of the things that many of the parents, whether it was Jennifer or JB, they
said the moment their child started communicating there was a real concern over how many things
that I say and thought weren't being understood in front of my child.
Right.
Elizabeth just typed, non-speakers are seen as low functioning.
And that is false.
We are just like you.
And you said something in the video, and you also said in the documentary, but that anyone
who can move their arm can make this communication.
I know that's hard for people.
I mean there's very severe people that are self-harming, that are having all sorts
of issues, but you've managed to even help individuals like that get to a place of communication.
I haven't had someone yet that we haven't been able to get to a board that has the full alphabet
on it, right?
Okay.
There are lots of typers now who are typing autonomously, meaning it's in a cradle, no
one's helping it, no one's holding it as a communication partner.
And those folks hopefully are helping to validate it for those spellers and typers
who can't get to that level of autonomy.
Right.
Because they all started at the same square one, right?
They all started with an alphabet board that was actually split across three boards, so
the targets were really big because your eyes are actually controlled by those fine motor
muscles.
So we can't take that out of the equation.
You have to find the letter you're looking for, which is why it takes time to learn
to do this accurately, is like we can't remove all the fine motor from it, but
we remove as much as we can so that we don't spend too much time learning.
We get to the communication part.
Yeah.
I lost my camera.
So let's get to what's happening now.
And part of it's probably because of the success that you've had.
I guess no one was paying attention when there was a hundred children doing this,
but now that you're moving into tens of thousands, it's going to require
change on institutions, on insurance systems, right?
Or at least an understanding of what's taking place here.
So Elizabeth typed, must be on the same wavelength as her.
Non-speakers are being discriminated against nationwide by state agencies wanting
to validate our communication.
Why is it not good enough that Elizabeth is sitting here communicating right now?
I mean, just, what's up with that?
I know.
I mean, you could, I know that you could put several spellers here that are
part of the document.
They've sat here together, all communicating on this stage.
But they're giving, what is it?
You need double blind trials or something?
Allegedly.
But I don't think we need a 20-year million-dollar study to prove it's
working when you watch it working.
Right.
And even by every, you know, every field, whether it's medicine,
the American Speech Hearing Association, all these different agencies
have a definition of what evidence-based practice or empirically
validated practice is.
This meets their criteria.
Yeah.
There's plenty of research showing that these spellers and
typers are the authors of their own work, that their intellect is intact.
They just keep moving the bar.
Like, they're going to keep telling people it's not validated,
it's not evidence-based.
When it is evidence-based, it's just a narrative that's somehow leaked out
by somebody and people are buying into it.
All right.
So who owns ABA?
Because that just sounds like giant money interest.
It just sounds like the same corruption we're watching Bobby deal with.
So can we name it?
Who is it?
Who's behind this?
I mean, what I've heard is that literally hedge funds now
own most of it.
Like BlackRock and these big just bought into it.
I mean, look, it's got to be hugely.
If we are at one in 30 children now being diagnosed on the spectrum,
one in 12.5 as said in California, this is a booming industry
and obviously running all these kids through ABA.
But ABA goes on and on.
I mean, I know there's been frustrations how long it takes.
Yeah.
And so many of the spellers come out and say,
I'm tired of being talked down to.
Right.
That's why I keep saying there's an opportunity here, right?
Yeah.
If we could just presume competence and actually start teaching them motor
skills, then the evidence is right there.
Like you said, the kid starts learning.
I say kid, the kid, the adult, the, the non-speaker starts learning
to type and spell, then you see for yourself.
Yeah.
Elizabeth had something.
Okay.
So Elizabeth typed, the corporate interests want to keep us disabled.
We need Secretary Kennedy to issue federal guidance to follow
the Americans with Disabilities Act.
Right.
So what Elizabeth is saying then is that we don't need a new law.
We need to adhere to the laws that exist.
Sounds to me.
Right.
The state agencies have started ignoring the Americans with
Disabilities Act, which says people are entitled to use their
primary and most effective method of communication.
Right.
What's more effective than 26 letters, whether on an alphabet
board, a keyboard, typing autonomously, like what's more
effective than that?
Because with 26 letters, you can say anything.
Right.
Yeah.
So there's nothing more effective than that.
It's their primary method of communication and it's their
right as a disabled person to choose for themselves.
Their preference, their client preference is one of the
elements of evidence-based practice.
So you've got families and non-speakers all saying this
is what I choose.
We've got federal law that says, great, you're entitled to it.
Right.
But then we've got state agencies sending down memorandums
saying, nope, you can't do this.
And blanket in California, blanket denial letters for
services that involve typing or spelling.
Even a camp, there's a family camp that families go to but
it's called the Spelling Spellers Camp.
They won't fund that either and it's a social recreational
activity because the word Spellers is in the title.
But by the same people that will rake me over the
coals for talking about it, autism is saying autism is
beautiful, which it is.
For the people that are here that exist, I'm doing work
trying to figure out what's making the numbers go up.
Can we get on the other side of it?
But obviously you're involved in making their lives
better, giving an ability to communicate, to have
autonomy, the ability to have a life.
And these same people that keep talking about how
beautiful this whole thing is are the ones stepping
it seems into the way of progress.
Yes.
Nothing, I'll tell you, from the minute a child has this
actually, let me let us first.
So Elizabeth said, Elizabeth typed, we need this in
New York right now where the state agency hijacked
our communication bill of rights.
Please join our movement for justice.
Well, how do we do that?
We'll get to what's happening in New York but how do
we join the movement for justice while we're
talking about it?
There's a campaign page.
We're calling it the communication is a human
right campaign.
It's on your screen right now everybody.
If this isn't important to you then I don't know
what is.
We should all dive in here.
And demand.
I mean I just, this is one of the great
travesties.
Can you imagine spending your life trapped in a
body.
People are talking down to you, you know, all
the time acting like you're, you know, a
child when you're an adult, you're ready to
go to college and then you finally break free.
It's like the movie Awakening is only in this
case it's not a physical thing.
It's not the drug failing you.
It's your society and it's your government
and it's lobbyists that are taking away
your interest in communication.
I just can't think of a greater travesty
really in this world.
Well and you know our government has a
policy on disability.
Do you know it says in IDEA, the
Individuals with Disabilities Education Act
that it is a natural part of the human
condition.
That disability is natural and that it in
no way diminishes a person's right to
participate meaningfully in their life and
society.
And these state level decisions are
about taking away their right to pursue
happiness, inclusion, college classes,
adult day programs.
If they're seen in the community in
California using a letter board and
they're getting funding to attend that
adult day program, they're getting
notice of action letters to those day
programs that they might shut them down
and stop funding.
Because they see them using the board
to communicate.
Because they see them using the board
to communicate.
They're not even teaching them there.
They're not even teaching them how to
use it.
These are kids and adults, I'm
sorry, adults.
Yeah.
Who are already fluent typers.
Their rights are being jeopardized
because of whatever the corporate
interest getting into the state level.
And Elizabeth typed.
We need you to follow our social
media campaign and amplify our voices.
Okay.
What is the social media handle we can
use?
So there's at Speller's freedom.
Yeah.
Okay.
At communication for the number four
all org, especially this month.
So the more our reels get shared and
reshared, the better it helps us
because really, like there's a court
of public opinion out there too.
Yes, of course.
And so what I say every day on this
show, it's the most important
court there is.
Which is why I called you guys.
Right.
And I was like, please help us.
Because that's it.
And the world at large also needs to
know and this is autism action month.
And if people can help us, just
even that, share those stories and
share those reels so that the court
of public opinion starts to hear
what's happening, hopefully that will
start swaying some of those state
agencies.
Let's bring up that social media
handle again really quick.
I want everyone that is watching
this show.
We are an action group that is
why we're the informed consent
action network communications for
all org.
I want you to follow them and then
Spellers freedom.
If you have social media, let's
start following and sharing all
these posts this month.
This really will make a difference.
I think we've got to show all
these politicians.
So what happened?
Elizabeth typed, the politicians
watch how loud our voice
rises online.
Elizabeth, you're a true warrior.
I love that about you.
Tell me specifically what happened
in New York.
So how does something like this go
down?
She talked about a communications
bill of rights.
I'm sure Elizabeth can synopsize
it.
She championed a bill there for
the communication bill of rights
and it passed unanimously in the
house, unanimously, which is
amazing.
Then it went on to the senate
and it got stuck in the senate
disability committee by senator
Fahey and there is where some
of this influence from corporate
interests must have come
through because the bill got
amended and it's through in the
words that the communication had
to be autonomous and had to be
validated.
If it was autonomous and validated
then okay, it's covered under this
communication bill of rights.
But unless it's those two things,
unless you can get out of the
wheelchair and walk by yourself
and prove yourself.
Prove you can stand.
It's a bad money python skit.
Correct.
So those words got added and
then our community, this is
why the social media thing is so
important.
Our community got on the bandwagon
and flooded all of the disability
committee's office with phone
calls, letters, e-mails, social
media posts and the bill, she
rushed it through to get it passed
this past Tuesday and it got
tabled.
It got taken off the agenda.
Fahey?
Sounds like a real gem.
But it's not done yet, right?
Still need to go back to the
version that was approved by or
unanimously voted on in the
House.
That's the version we'd like to
get passed in the Senate.
Go ahead, Elizabeth.
So Elizabeth typed, the bill
was amended to take
our rights away.
This is a toxic
bill now, but we
shall overcome.
Absolutely.
So
New York, California, the
typical states that are making
life difficult on many different
fronts.
What is the
I mean, it seems to me
ABA must be fairly
expensive.
So it can't be a cost.
I mean, these are all daily
practices that require training
and everything like that.
Well, ABA is now covered by
insurance.
So it doesn't cost the family
when you say cost.
But that's what I mean,
overall cost because the
insurance should be going to
spellers too.
Correct.
It should be.
As a formal assistive
technology.
Because again, it meets all
the criteria to be
an assistive technology
method.
I would even assume would
lead to less need for
many in the future if they
could communicate their needs
versus needing many people
to communicate for you.
Totally.
Think about Jen and Cade,
who've been on the show
and the fact that he
helped the doctors discover
his stage four cancer.
Right.
And helped the doctors
navigate him through the
treatment because they needed
feedback, subjective feedback
about are your feet numb
or what's happening
so they could adjust the
medication.
If he had not been spelling
to communicate,
he might not be here
right now and he's serving
with Elizabeth on IAC
at this point.
Right.
So amazing.
Even those, you know,
you talked about earlier,
those folks who are
self injurious or really
dysregulated and sure,
it takes a minute in the
beginning to get their
bodies into a state of
like less fight or flight
so they can learn to do
this motor planning.
But the game,
how the game changes when
they can communicate
what is really triggering
them, it's life changing.
Right.
And Elizabeth typed,
we don't need more
funding.
Families need choice to
find what works for their
child.
Nonspeakers need to spell
and type.
Absolutely amazing.
I want to thank you
for joining me today
bringing this conversation.
Elizabeth, I want to
give you one more
opportunity.
You said it before,
but I want you to make
a statement for Robert
Kennedy Jr.
Oh.
And I'll make sure he gets it.
Wow.
Okay.
And so as we sort of
wrap this up,
it's autism awareness month.
So many families are
out there that wonder,
you know, I mean,
I've seen this,
it seems like it's
hard work.
I know that of the
families that have been
involved with it.
What would be your message
to people out there?
I think the one I get
is like they can speak
a little bit.
So I don't think this
is going to work for me.
So what would you say
to those families?
I really love speaking
to those parents,
because if the elevator
pitch version is this,
if your child cannot
or adult child cannot carry
on a conversation with you,
if they cannot reliably tell
you what happened today
or what they did,
then they can benefit
from bypassing their fine
motor muscles
and using the gross motor
of the shoulder to type
and spell to communicate.
Right?
So it will not reduce
their verbal speech.
They will not stop speaking.
I would think that would be
a fear, right?
If I do this,
then I'm locking them
and they're never going to
get to that dream
that I have of them
communicating a speech.
No, in fact, in fact,
and we haven't studied
this yet, but anecdotally,
everyone's speech improves.
Their articulation improves.
Their reliability
of their speech improves.
It's like the brain
doesn't know the difference
between these new pathways
it made for pointing
to letters
and making the mouth
actually make
the speech sounds
it wants to make.
So it will not reduce
their speech.
It could only enhance it.
Yeah.
So it's sort of like
the juice is worth the squeeze
to like give it a shot
with, you know,
the videos that
C4A Academy puts out
or finding a provider
who's trained
in one of the methodologies
that teaches.
There's many paths
up the mountain
where like,
we don't really care
which path you take.
The point is give it a shot
because I think it can
make a world of difference
in your minimal speaker
and even your
unreliable speaker.
Amazing.
Okay.
Here we go.
Secretary Kennedy,
you are a champion
for autism families.
Please issue guidance
to protect non-speakers
from discrimination
nationwide.
Okay.
I'll make sure
that he gets that message,
Elizabeth.
Thank you for being
so outspoken.
You are
incredible light
in this world.
Congratulations
on being
a member of IACC
that is so spectacular
and I know that
you're going to make
great change there.
I want to thank you
all for bringing this
to us
and let's bring up
these social media platforms
one more time
for everybody.
use this moment right now
to punch it into your phone.
Let's start.
This is the website,
SpellersFoundation.org
slash communication
is a human right.
Let's also
start following
all these social media
channels,
communication for all
org
and Spellers
freedom.
Let's start sharing
those videos
because I'm sure
you got a bunch
coming.
This is super important.
Thank you
for taking the time
to join us today.
We like to change
the world on this show.
That's really
what this is all about.
I love the fact
how many people
come on
and leave the show
and say
we've never had
an audience
that was that involved
that got involved
in our social media
or hit our website.
You're an active
community.
It's really
what makes it
spectacular.
It's one of the great
things that
the High Wire provides
is you
as an audience
making a difference.