Picture yourself back in your grade school
classroom. I don't care if it's elementary
school, middle
school, high school. Just put yourself back
there for a second. Look around the classroom.
Do you see
any kids with and without disabilities studying
together and learning together? Raise your
hand if you do
see that. One or two...couple of people in
a room of about a hundred. Okay.
Did you have a best friend who had a disability?
A significant disability. A few people. Okay.
Did you have
a boyfriend or a girlfriend that had a significant
disability? One person. Two people. Okay...out
of a room
of a hundred. Alright, let's be honest for
a second. Did you feel some fear or nervousness,
when you
were a kid, about talking to a kid with a
disability? Raise your hand if you felt some
fear or nervousness.
Okay. Probably the majority of the room.
We have something in common. I felt exactly
the same way. That's me at four. I was in
preschool and I
became friends with a boy named Richard. And
there was something different about Richard.
Richard
had a headband on all the time. And it was
a little strange to me that this kid always
wore this headband
and I started wondering, "What's under
the headband?" 'Cause Richard was different
because he had
this headband. And I learned that Richard
had a lot of surgeries and I always wondered,
"What did those
ears look like under that head band?" And
it was kind of scary to me to think about
how different
Richard was.
As I got older...went to college...disability,
honestly, was just a blip on the radar screen
for me. It was not
a big part of my life. I met my wife...we
had our first son, Isaiah. Isaiah's one
of these kids that, at 10
months, he was walking...he was talking...he
was always ahead of the curve. And then Samuel
came
along. He's cute, isn't he? I'm biased.
I think he's very cute. I was thrilled.
We had another boy. My wife,
Betsy, and I were like, "We know how to
do boys! This is great! We can do boys!"
And I started
envisioning all the things that they would
do together like I did with my brother. Playing
baseball.
Wrestling. Going hiking as a family with my
sister and my parents. And I just started...it
was wonderful to
kind of envision this in my mind...until we
noticed a few things. And one of the first
things we noticed
were his hands. And if you look closely at
the picture, you see his hands are balled
up in a fist. That's not
really typical.
So we went to Samuel's pediatrician and
we said, "Listen. We're seeing some things
that are different
with Samuel. Can we...what should we do?"
And he said, "Listen...you know, kids develop
in different
ways. Don't worry about it. Let's just
play it by ear. But just to be sure, let's
go see a neurologist to make
sure there's nothing wrong." Okay...we
get a little nervous about that step. We see
the neurologist...he
does lots of blood samples...skin samples.
And a few weeks later, I get a phone call
and the neurologist
says, "Mr. Habib, I think your son has a
mitochondrial disorder. Let's get together
in a few weeks and
talk about it."
So I did what no parent should do but every
parent would do. Want to guess? Google "mitochondrial
disorder!" Of course! And the first thing
that came up was "usually fatal." And
I felt like I was kicked in
the stomach. And I remember thinking, "What
does this mean? What is this going to mean
for our life?"
Now thankfully, I now know there are thousands
of mitochondrial disorders that have lots
of different
ramifications. But in Samuel's case, it
did cause cerebral palsy. So suddenly we were
on this journey that
we never, ever expected to be on.
So every night my wife and I would be together
at the dinner table and we would be talking
to each
other: "What did Samuel do today? Did he
roll over at all? Was he sitting up? Was he
trying...was he
talking at all?" You know, just trying to
see...is there some sign that he's getting
better? I remember our
physical therapist telling me, "If you...maybe
if you massage him each night, it might loosen
up his
muscles." So I would do those massages and
on the nights when I forgot to do that massage,
I would
beat myself up. I would feel so guilty that
I wasn't doing what I needed to do to fix
him.
We started wondering, "What's his life
going to be like in school...in the
community...relationships...work...college?
You know, how can he go to college when he
can't even hold
a pencil? How can he play with his friends
when he can't just run outside?" It was
completely overwhelming. 
Over time, we finally came to
terms with the fact that Samuel had a disability and he
would have a disability—a lifelong disability.
So what do we do now? And what we realized
we had to do
was create a vision for Samuel and let him
create a vision for himself. So what would that vision be?
The vision that became obvious to us was that 
we needed to make sure that he felt like he
belonged.
That he belonged in our neighborhood...that
he belonged in our community...and perhaps
more than
anything, that he belonged in his local school.
Because how can you feel like you belong in
your community if you don't feel you belong in
your own neighborhood school, which is the
hub of the
community? So that got us thinking about inclusion
because for him to go to his local school
would mean they would have to work to include him.
Now luckily, Samuel's a charmer.
So...and a bit of a flirt. So in preschool,
that wasn't that difficult, right? He was
completely included in
preschool. He belonged. No doubt. In elementary
school, he was fully included in general education
classrooms. He was supported...sometimes,
quite literally, by an expanding circle of
friends. He belonged in that general education classroom.
There was no doubt. He joined the scouts.
He acted in
school theater. When other kids were speaking
their lines, Samuel used the communication
device
mounted on his wheelchair to speak his lines.
And that was normal. That's what he'd
been doing all day
long with his peers in school. For him, that
stage was a place where he belonged.
Samuel is a big baseball fan and he started
playing baseball with T-ball right up through
coach-pitch league, and he loved it, and we loved watching
the joy in his face. And then came the age
where he was
gonna be in the league where kids are pitching
the ball quite fast...where kids are actually
hitting the ball
over the fence at times. And he wanted to
play. So I thought, "Oh my gosh. How is
he gonna play at this
level?" And I remember getting together
with the league president and saying, "Joe,
listen. Samuel wants to play in this level. I don't really
know what that's gonna look like. You know,
should we send a
letter home to families? Should we make this
statement about inclusion? Should we have
some communication throughout the league?"
And he said, "Dan, slow down. Listen. If a kid
in our community
wants to play baseball, he's gonna play
baseball. End of story." I just said, "Wow."
That's all I could ask
for.
So he played. Oh, yeah, he played. He would
get up there...he'd hit the ball off the
Tee when the other
kids were playing...hitting off a pitch. He
would go like a bat outta hell down that first
baseline on his
bicycle with a little help from a coach. If
he was out, he was out. If he was safe, he
was safe. He was
playing baseball. He belonged on that field.
Now in middle school, Samuel has a great circle
of friends in eighth grade. He's in general
education in
all his classes and he's on the honor roll.
Now if you're surprised by that...that he's
on the honor
roll...don't be. Because Samuel represents
the statistics that we have built over 35
years around inclusive education. The statistics have shown
that kids with disabilities who are included
in general
education classrooms have better outcomes
socially, academically, in terms of behavior,
in terms of post-school outcomes, in terms of everything
you can imagine. Advocate for inclusive education in your
communities and schools. Advocate for inclusive education.
It's also important to look at the flip
side of this...of a different story. And this
is the story about a boy
named Todd. Todd was a kid that I got to know
early in my years as a photojournalist when
I did a
documentary story on mainstreaming kids with
disabilities into general ed. It was almost
like an experiment back then. "Let's just try
this and see how it works." Well, Todd flourished in elementary
school. He was with his peers. They got to
know him. The problem was, as he got older,
adults particularly...even in middle school and high
school...kept talking to him like he was a
four-year-old or a
five-year-old because he had cerebral palsy
and couldn't speak and couldn't walk.
At times, his mother
told me they would just pat him on the head
as a teenager. They would make promises about things
they were gonna do that went unfulfilled.
Todd went through high school that way...pretty
much being treated like a little kid.
Finally at about age 20, he got access to
some communication technology that allowed
him to express
his thoughts and feelings. You know what one
of the first things he said was? He said it
a little more
colorfully than that. And I...it's funny,
but it's very sad that all this anger had
been built up over these
years because Todd had been treated like a
little kid when he was absorbing everything.
He was
understanding everything. But he was never...he
didn't have that chance to be...for a bar
to be held high
for him. Unfortunately, Todd is also representative
of statistics. 56 percent of kids in this
country with
intellectual and developmental disabilities
spend their entire day in self-contained,
separate settings just
for kids with disabilities...whether it's
classes or separate schools. Even though we
know...and all the
research says...that that is not going to
yield better outcomes for them.
Advocate for inclusion. Advocate for inclusive
education. So why do we continue to segregate
kids at
such a high rate when we know the statistics
don't support it? Why do we do it? Well,
we know that
sometimes when you do things for a long time
in society, it's hard to change. Right?
You just get into
certain habits that this must be the way to
do it. But I think about this all the time.
What's it gonna take
to change that dynamic so that so many kids
are not being segregated? And I've come
to believe that
maybe it's really not about Samuel. Or Todd.
Maybe it's not primarily about them. Maybe
it's actually
about the other kids. Maybe we need to show
that inclusion benefits typical kids without
disabilities as
much or more than they benefit Samuel or Todd.
The truth is that there are all these research
studies that are being done at universities
that show
academic benefits for typical kids who are
learning in inclusive settings. And there's
one particular study
that was done at Vanderbilt where they did
two groups of kids they studied. One group
were in an
inclusive environment alongside their peers
with disabilities; one group was separated
from their peers
with disabilities. The group that worked alongside
their peers with disabilities had an average
of a 15
point increase in their academic achievement.
And what they did is they figured...they figured
out why
that happened and it was because when you're
working collaboratively with a peer...with
a friend...with
somebody who might need a little extra assistance
or some coaching...you're much more engaged
in the
curriculum. You want to understand it. You
want to study it.
So those kids were so engaged 'cause they
had this friend that they wanted to make sure
that they were
a good collaborator with. So they achieved
at a higher rate. So...but let's look beyond
academics.
Academics are important...very important.
But some of my favorite moments in Samuel's
life and in my
life were the walks to school each morning.
'Cause that's where you get little glimpses
of the
conversations that happen among kids, right?
Or you see those little rituals that go on
or the games that
are played or those little stories from home.
Honestly, when I think back to school, I think
I remember
the walks to school more than I remember school
itself. So, you know, that's obviously critical—those
extra parts of life that go beyond the classroom.
So let me ask you another question.
When you think about who you are today as
a person...and I don't mean just professionally;
I mean your
hobbies, your passions, your relationships,
everything. Which of these two factors had
a bigger impact
on your life? Was it the academic experience
of school or was it the social and emotional
experience of
school? So we'll do a quick poll. How many
of you say the academic experience of school
had a bigger
impact on who you are today? There's no
wrong answer, I swear. Okay...one...two...okay.
We got three
or four people. How many of you say the social
and emotional experience of school had a greater
impact? About 95 percent of the room. But
we measure schools almost primarily...almost
solely...by how
they do academically by kids. When all of
you have just told me that the social and
emotional
experience of school was, for most of you,
more important.
So I'll give you a real-time illustration
of this point. Samuel and two of his friends—Jacob
and Fletcher—
and I took a great road trip to the Hall of
Fame in Cooperstown, New York this summer.
There's
Jacob...there's Samuel as a 13-year-old
with his buddies. We had a great trip. The
Hall of Fame was
awesome...wonderfully wheelchair-friendly...loved
seeing all the memorabilia. And then it was
time to
go out for lunch in Cooperstown and the problem
was, we couldn't get into any of the stores
or
restaurants. As you see in the picture, almost
every store had a step of three inches or
six inches. Well,
for Samuel, that's like a brick wall to
get his wheelchair over a step like that.
The kids were furious. It
had honestly kind of put a damper on our trip
even though, overall, it was a great trip.
So they came
home and what did they do? They wrote a letter.
They wrote a letter to the Chamber of Commerce;
they wrote a letter to every newspaper in
the area;
and they said, "We are mad because almost
all the stores in Cooperstown are not accessible
to someone
in a wheelchair. We had a hundred dollars
to spend on souvenirs, and we made a pledge
among the
three of us that we were not going to go into
a store that Samuel couldn't get into. And
we really hope
that this letter helps to change downtown
Cooperstown so that other people don't have
to go through
what we went through." That letter was published...we
got a call from the Chamber of Commerce asking
for our ideas and input. I said, "You've
gotta have people in your own community who
can think about
this. You don't need someone in Concord,
New Hampshire." But they were motivated.
They were
motivated.
So I continue to think though maybe it's
not just about Samuel. Maybe it's not just
about his peers.
Maybe it's not even about you. Maybe it's
about your son...your niece...your nephew...your
grandchild.
What kind of world do you want them to grow
up in? When they have...let's say...a grandparent
that develops Alzheimer's or has a stroke and
suddenly starts moving in a very different
way or talking in a
different way, do you want them to think that's
weird and freaky and that they are scared
of that? When they have a cousin that's born with
Down Syndrome or autism, do you want them
to feel scared
and distant and uncertain how to approach
that cousin? Or do you want them to know that
this is a natural part of life? What kind of world do
you want them to grow up in? Who do you want them to be?
Who do they want to become?
Advocate for inclusion. What I've come to
understand is you can't teach this. You
can't teach this. You
have to live it. You have to experience it.
You can't do a lecture on it, even though
I'm trying my best.
You have to experience it and you have to
be there all the time, every day, around you,
in community
and schools alongside people of this type
of diversity. This is life. This is part of
our world. It has to be
seen as a normal part of our world.
Now I've also come to understand that it
takes generational change. I mean, don't
forget that not long
ago, people were smoking on airplanes, right?
We were not wearing seatbelts in the way
back...especially in the way back. We were
legally segregating blacks and whites in school.
FDR had to
hide his wheelchair in public photographs
because it was seen as a sign of weakness.
But generations
have come where these things are not seen
as a given anymore. This is generational change.
So I think
back to another story that I heard from Ms.
O'Brien, Samuel's teacher in elementary
school. And she
told me that one day there was a family that
was resettled from a war-torn area of Africa...Burundi.
And
this family came to central New Hampshire...came
to Concord...knowing nothing about the American
culture, language, anything. And literally
they came and because they had been building
fires on the
floor of the refugee camp the week before
to cook their dinner, they built a fire on
the floor of their
apartment to cook their dinner.
But this little girl came into her classroom
and she knew nothing and the kids said, "Let
me show you
how to use the cafeteria and get your food.
Let me show you what to do on a fire drill.
Let me show you
around the classroom. Let me help you understand
what to do on a field trip." They were incredible
with
her. They were patient. They were compassionate.
They were creative. They were loving. And
then Ms.
O'Brien said to me, "That's what they
learned from Samuel and that's what I've
learned from Samuel."
Thank you.
