This little girl you see
is wearing a hearing aid.
She's deaf.
This year, in the united states, twelve thousand babies will be born
with permanent hearing loss.
If they're not identified early
and provided with appropriate support and education,
they will fail to develop language,
they will have a difficult time in school, they will be socially isolated
from their friends and family,
and they will have the prospect of a menial or no job at all, little later in life.
My talk is about the amazing advances that have been made in the last 25 years
that are changing the world for deaf children.
It's about establishing a sound foundation for children who are deaf
that enables them to
achieve and succeed every bit as well as children with normal hearing.
Three years ago, I was invited to attend the unveiling of a statue of Helen Keller
in the Capital Rotunda in Washington, D.C.
As you all know, Helen was both deaf and blind.
The statue depicts her standing at a water pump,
at the moment that she discovered that words have meaning.
As she felt the water run into her hand and her teacher, Anne Sullivan, inscribed
on her open palm the word "water."
Helen went on in life to become of very accomplished person.
She was an extraordinary communicator. She is world renowned as a lecturer,
a writer,
and a social activist.
Later in her life, Helen was asked whether
deafness or blindness was the more serious disability.
Her surprised a lot of people. She said that
deafness is much worse than blindness
The reason she gave for that really summarizes why I'm so excited to be
working in this area.
She said that blindness separates people from things,
but deafness separates people from people.
I'm sure all of you are just like me - that the most important things in your
life have to do with other people,
and it's the ability to
engage those people and to communicate with those people
that is what really makes that happen.
These six people are also people who had extraordinary accomplishments.
They're spread out over geography and history.
What they have in common is that they too were all
deaf or severely hearing-impaired.
In spite of that,
they learned how to communicate with other people. They went on to accomplish
great things.
Their lives demonstrate that deaf people
can be extraordinarily productive and successful,
but that's the exception back then instead of the rule.
What we're doing
here at Utah State University,
is helping deaf people make that
the rule instead of the exception.
Permanent hearing loss occurs more frequently than any other condition
that we can screen for at birth.
If you took ten thousand
randomly sampled babies in the United States,
then thirty of those would have permanent hearing loss
compared to
only eleven with down syndrome or two with sickle cell anemia;
conditions that we're all much more familiar with.
95% of deaf babies are born to hearing parents.
So what's the typical reaction that that parent has?
Listen to this mother
who describes what most mothers would describe in this situation.
(Mother) "We noticed when she was just an infant that she didn't turn
and look at us
sometimes when we would talk to her. By the time she was a year old,
we took her in and asked our pediatrician, and said "Maybe something is wrong?"
He couldn't really tell. He didn't have any answers for us. We decided to go have her
hearing checked and
she was about 13 or 14 months by the time we got an appointment and could get in.
They discovered it right away.
She can't hear anything without her hearing aids.
I cried. I was just shocked,
and I didn't know what to do. I'd never met a deaf person
in my life.
I didn't even know what to expect. We called back the next day and said "Well,
does that mean she won't talk?"
We wanted to communicate.
We were heartbroken, not that she was deaf,
so much as that we didn't know how to communicate with her.
So there are three key points I would hope you would remember
from what she had to say. First is that most parents are completely surprised to
have a deaf child,
and they don't know what to do,
and they're not sure where to go for support.
Secondly, is that many of the professionals to whom they go to for support
have also not kept up with the recent advances.
And finally,
the most important thing for parents
was summarized very well when she said,
"We were heartbroken,
not that she was deaf,
but that we didn't know how to communicate with her."
Now deaf children communicate in a variety of ways.
Most of your probably familiar with deaf people using sign language.
And this is a completely appropriate option that's chosen by many.
But in addition to sign language there's an increasingly large number of deaf people
who are using listening and spoken language.
And smaller groups use combinations of these two.
What I'd like to do next is to play
a video of two little deaf boys
that demonstrates just what an effective communication tool sign language can be.
These boys are three years old;
they're just leaving an auto repair shop in the family car with their father,
who is deaf,
and their mother who is hearing, but uses sign language.
Watch how they communicate.
They're observing what's going on around them.
They're connecting those events to the conversation that's ongoing.
This little boy is engaging in a parallel conversation with his mother
about a different topic, but then coming right back.
They're connecting what they're seeing to future events.
They're interpreting what they're seeing.
In short, American Sign Language is a complete language.
They aren't just repeating words or naming things.
They're having a conversation with each other.
And American Sign Language,
if children are given a fluent example in their homes and if we start early,
is capable of doing that.
They can communicate every bit as well
as hearing people can communicate.
Now I'm going to give you an example of deaf people who are using listening and spoken language.
This is a classroom from thirty five years ago.
The first example I'm going to show you depicts where we were then, and then
I'll compare that to where we are today.
I'm going to play an audio tape from a little girl in this classroom,
who has
severe hearing loss in both ears. So she has some residual hearing and wears a
hearing aid to amplify that sound.
Listen and see if you can understand what she says.
Now, I suspect most of you had
a great deal of difficulty - in fact, most of you probably didn't understand a word.
Let me play it again with a visual clue.
With the visual clue most of you probably understood most of it.
This is the situation families were in thirty years ago.
For the family members, they became accustomed to the cadence and the rhythm
of 'deaf speech,' as it's often called,
they could understand most of what she was saying.
But, for people in the neighborhood, or in the school, or in the grocery store,
their reaction was just like your first reaction was in terms of being able to
communicate with that person.
Now, i want you to compare what you just saw
with two little boys who actually have much more serious hearing loss.
They have profound hearing loss in both ears,
so they don't hear anything. "Hey. I'm AJ. "
"Hi. My name's Gibson. People are special in different ways."
"One of the things that makes me
feel special is that I'm deaf." "I'm deaf too, and deaf means that
your ears can't hear. AJ and I have
special things to show you. They're called Cochlear Implants."
"They help us hear." "Cochlear Implant is a big word,
so I call 'em C.I.'s."
"'C' is for 'Cochlear' and the 'I' is
for... um, 'Implant'."
"C.I.s are amazing
because they are like bionic ears."
Sometimes my friends have questions about my C.I."
"Hey, how does that stick to your head?"
"There's a magnet inside." "The magnet here connects
to the magnet in my head." "The inside and the outside have to
work together." "When I disconnect this, I can't hear."
"When it's on, Voila! I can hear!"
So, what enabled us to move
from where we were thirty years ago,
to where we are today?
There are really three factors,
all of which
Utah State University has been very involved in moving forward.
The first is earlier identification of hearing loss,
the second is the availability of better hearing technology,
and the third is the availability of high quality early intervention programs.
From 1988 to 1993, our team here Utah State
University did the first large-scale clinical trial of universal newborn
hearing screening.
We're able to demonstrate that with simple in relatively inexpensive
equipment, you could identify babies a few days after birth
who had hearing loss.
The results of that study were taken by the national institutes of health,
and lead to a recommendation that all children should be screened for hearing
loss before they left the hospital.
Since that time, we've make steady progress.
In 1993, this country was screaming about 3% of the babies born.
By 2008 we were screening 98% of the babies.
Screening is done when babies are just a few hours old,
using one of two approaches. With a simple to use, relatively inexpensive
piece of equipment,
such as this,
Oto-Acoustic Emission screener.
So, the screening itself is done by a screener in the hospital;
all babies are screened within just a few hours of life
with either Oto-Acoustic Emissions, in which a small earphone is placed in the babie's ear.
if the ear is healthy, then a sound from that ear-phone is responded to by an echo,
or an Oto-Acoustic Emission, that can be measured by this piece of equipment
and the result displayed on the screen.
The second approach is called Automated Auditory Brainstem Response, or AABR.
It's similar, but little sensors are
taped on the baby's head,
a sound is played into the ear, and
the sensors analyze the brain's response to that sound.
In just a few minutes, the testing is done and we know whether or not the baby can hear.
Now, the reason we do newborn hearing screening
is to be able to help the children then
develop language, and to be able to communicate and become successful.
Improvements in hearing technology is what has led to our ability to do that.
So, this baby is being fit with a hearing aid, at just a few months of age.
Hearing aids have become much better in the last 25 years, especially for babies,
so that they're able to be frequency specific; they're flexible,
they can focus in on the kind of hearing loss that the baby has, and
with that, babies are able to begin to get language very early in life.
The reason most babies can speak when they're
12 to 15 months of age is that they've been listening to language for a year.
Deaf babies haven't previously been able to do that;
now they can, and it makes all the difference in the world.
So, in addition to hearing aids,
a hearing technology that has changed the world for
a smaller group of babies are Cochlear Implants.
About 20% of babies have no hearing at all,
so hearing aid which amplifies the sound
is of no use to the babies.
A Cochlear Implant is a small device that
is surgically implanted into the
head of the baby just under the skin,
and then a receiver on the outside, and a transmitter
allows it to work.
This internal device in the electrode array
would be implanted just behind the ear under the skin,
and the electrode
would be threaded into the cochlea,
inside the inner ear.
Then a speech processor which is worn behind the ear
gathers sound from around the child,
converts it into digitized information,
and sends it to a transmitter - which was a little magnet that AJ talked about
being clipped to his head.
That transmitter then
sends the sound
through the skin
into the internal device,
which activates that electrode which is threaded through the cochlea,
and the electrodes stimulate different parts of the cochlea,
and that sound is sent to the brain which interprets it as sound.
So, it's an amazing device that for
that group of children who have no hearing at all,
allows them to pick up sound and to interpret language.
Now there are many other aspects of providing
services to these children.
One of them is having successful early intervention programs.
Five years ago we established a program here at Utah State University called the
Sound Beginnings program,
which is focusing on
helping those children whose families choose listening and spoken language
to use cochlear implants and hearing aids,
to learn to talk and communicate the same way that AJ and Gibson were talking and
communicating.
Now, even though
our work is focusing mostly on children who have chosen listening and spoken language,
the principles i'm talking about: early identification, early education,
apply equally as much to those children whose families choose
American Sign Language.
It's just that our work is focused on listening and spoken language.
In addition to the school,
we recently acquired equipment called Near Infrared Spectroscopy (NIRS) equipment,
that allows us in a non-invasive way
to detect what's happening in the brain.
And so, we can actually see how the brain is reacting
as children learn language;
we can use that to determine who's an appropriate candidate for a
Cochlear Implant,
and this is changing a lot about what we understand of how to help deaf
children be successful.
We're also doing research where we're using two-way video conferencing equipment
to deliver services to children who live in rural and remote areas.
Deafness is the most frequent condition for which we can screen babies,
but it's still relatively rare. A typical physician will only see 4 or 5 babies
with hearing loss in their lifetime.
And so,
if babies live in Salt Lake City, or now in Logan, they can get great services.
But if they live in Vernal, or Blanding, it's much more difficult to provide the
intensive kinds of services.
By using two-way video conferencing,
We're able to deliver services directly to those children.
Finally, we're reaching out to other countries in the world, using what we've
learned here to help them develop better early hearing detection and intervention programs.
Where we are with educating and supporting deaf children was summarized
well by the poet Robert Browning, when he said
"Ah, but a man's reach should exceed his grasp. Else what's a heaven for?"
We've reached the point in providing education and support for deaf children that,
we should understand now,
what's possible.
what we've grasped.
We can see that children, if they get early identification and early intervention,
if they have access to technology, deaf children can do everything that hearing children can do.
That IS within our grasp.
But, when Browning said that our reach must exceed our grasp, he was encouraging
us to continue to work.
One of the real challenges right now is
that many deaf children don't have access to the kinds of things that I've
described today.
If children have access to early identification,
if they have appropriate hearing technology,
and if we have high quality early education,
then the days are long past where we referred to deaf people as 'deaf mutes'
or 'deaf and dumb.'
Deaf children are fully capable of achieving everything
that hearing children are able to achieve.
But in order to do that they need access to these services.
And that's where Utah State University
is really changing the world for deaf children.
Thank you very much.