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.