IN THEIR OWN WORDS!
A HIGH SCHOOL AND COLLEGE STUDENT
REFLECT ON THE JOYS AND CHALLENGES
THAT COME WITH LIVING OUT THEIR FAITH
IN THE MIDST OF REAL LIFE.
Living
with Down syndrome
By
Joey Kane
One special thing about
me. . .
is that I have Down syndrome. Down syndrome
means having an extra chromosome in my body. It’s the way I was born. My
parents told me that when I was born on Aug. 9, 1995, the doctor looked at my
hands and eyes and confirmed that I had Down syndrome. This was not a surprise
to my mom and dad because they knew I was going to have Down syndrome. That’s
because of a test that had been done before I was born.
I don’t really think of
myself as having a disability
Having Down syndrome is the same as
having a disability. My teacher, Mr. Beall, talks about people having
disabilities. He says that it does not matter if you have a learning difference
because everyone should be treated the same. Other people think and say I have
a disability, but I don’t really think of myself as having a disability because
I feel I fit in with other people. You should not think that you can get away
with stuff just because you have a disability. If you are late to class, you
should get detention just like everyone else does.
Everyone can share their talents,
even if they have Down syndrome.
I have Down syndrome because I think
that God wanted me to have it. I didn’t decide I wanted to have it. Some people
think that because I have Down syndrome I can’t do what other people can do.
But that is not true. Everyone can share their talents, even if they have Down
syndrome. My theme song is “Anything You Can Do (I Can Do Better).”
One of the things that
makes me different. . .
is that I have more
trouble at school than other people. It is hard for me to take notes in class.
It is hard for me to see the board because I have bad vision. I need more time
to take a test because it takes me a long time to read the questions. The small
print on tests also causes problems for me. Other things are also hard. It’s
hard for me to remember my classmates’ names. It’s hard for me to find the
right metro bus to get on. I won’t be able to get a driver’s license because my
vision is not good enough to drive.
When I play X-Box I
probably surprise people.
Some people say that those with Down
syndrome don’t have good eye-hand coordination. But when I play X-Box I
probably surprise people because I do have good eye-hand coordination.
Some people may think that I would be
treated badly because I have Down syndrome. My experience has not been this
way. God tells everyone to treat people equally, and I think that most people
act in this way. I don’t feel as if people make fun of me or make me feel bad
just because I have Down syndrome.
I can do things that
other people can do. . .
even though I have a
disability. I can swim, play basketball, play Ping-Pong, be good at math and
give hugs to people. I can go to college, but I need to qualify for
accommodations because of my learning disability. I am awesome at prayer
because I love people and I know God loves me. I like sports like football,
basketball, baseball and soccer. I love the Notre Dame Fighting Irish, the
Gonzaga Bulldogs, the Washington Huskies, the Seahawks and the Mariners.
Last summer I worked
for the Seattle Mariners.
I can work just like
other people. Last summer I worked for the Mariners. My job was handing out
items at baseball games. I handed out things like bobble-head dolls, posters,
backpacks, trading cards and T-shirts. I got paid minimum wage: $9.04 an hour,
plus I got half-price food. Because I did such a great job, my boss asked me to
come back for the 2013 season.
I think service is what
God wants me to do.
Another job I had was
working at Mount St. Vincent’s. This is a nursing home where I would talk to
people, help them get to places and bring trays of food to them. I also cleared
off tables. This job gave me a good chance to make friends and do service. I
think service is what God wants me to do, along with following the commandments.
I would like to do
something where I am with the team.
Also, I had a job watering my
neighbors’ plants for the whole summer. Twice a week I had to water plants and
flowers so that they would not die. I got paid $5 each time. Someday, I will
have a job where I work almost every day. I hope it is for the Mariners. I
would like to do something where I am with the team. That way I would get to
meet the players.
I don’t think that
having Down syndrome would be a problem.
I might be a teacher someday. I would
like to teach little kids because they are cute. I would want to teach math. I
don’t think that having Down syndrome would be a problem in doing this.
Another way I am the
same as other people. . .
is that I like food.
Maybe I like food more than most other people. I really like pizza, pasta, gold
fish, hot dogs, ramen, french fries, hamburgers and milkshakes. If I were a
babysitter, I would probably order pizza for the kids and myself.
People can look at me and know that I have Down syndrome.
But they don’t see me
as having Down syndrome. They see me as myself. I can recognize people with
Down syndrome. Mostly it is the shape of their face and how they walk. When I
look in the mirror I don’t see myself as having Down syndrome.
God loves me because
God made me.
He made me just the way I am, and he
loves me just the way I am. Because I have a good sense of humor, people feel
more comfortable around me. Sometimes someone in my class says that he feels
embarrassed to be around me. On the other hand, this same person asked me to
sit at his table. This is a good example of the way it should be. I should be
treated as if I don’t have Down syndrome. In fact, I do not even think of Down
syndrome as being a disability, but many people think it is.
I think people know I’m a good guy
even though I have Down syndrome.
This is the first
time I’ve really talked about having Down syndrome. I don’t tell people because
I guess I think people know I’m a good guy even though I have Down syndrome.
Not to be cocky, but I’m a popular guy.
Joey Kane is beginning senior year at
John F. Kennedy Catholic High School
in Burien, Wash.
Below is a reflection by Matt Kane, Joey's brother, on the way Joey
has changed his view on life.
What Joey’s brother Matt says about him.
By Matt Kane
The grandest and most spectacular acts
of social justice often seem to occur in foreign lands and involve the
improvement and preservation of thousands of lives, but the most meaningful act
of social justice in my own life occurred much closer to home. It succeeded in
saving the life of only one.
Some 17 years ago my parents were
confronted by a physician who wanted to discuss the fate of a
soon-to-be-newborn baby. It had recently been discovered that this baby would
be born with Down syndrome, and the physician assured my parents that there was
still time to abort. Today it is estimated that 60 percent to 90 percent of
babies with Down syndrome are aborted, but for my parents this was never an
option. My younger brother Joey was born on Aug. 9, 1995.
Reflecting on this act of social
justice invokes a reflection on the importance of not only my brother’s life,
but of the right to life itself. When my parents chose life for Joey, they knew
that many trials and challenges lay ahead, but they were able to embrace the
possibility of difficulty and accept whatever God had in store for them. They
could not have foreseen the immense love and joy Joey’s presence would create
in our family and our community in the coming years. Living and growing up with
Joey has given me a rare perspective on the value of life. Over the years I
have watched him sculpt the very foundation of our family into one of profound
patience and tolerance, and he continues to influence the way I interact with
others inside and outside the family. He is a testament to the effects of
social justice, and I cannot imagine the void that would be left in my own life
if my parents had not recognized the value of Joey’s.
The invariable aspects of human-kind
define who we are as a people, but the unique and subtle differences by which
we are individually defined make us who we truly are. As I reflect on how much
Joey has changed the way I see the world, it saddens me to think of all those
whose differences not only cost them their lives, but also the opportunity to
change the lives of others. Without diversity our world would be stagnant and
our thoughts without purpose, for it is often through our differences that we
are able to enrich the lives of those around us. While it is true that my
parents’ act of social justice saved the life of only one person, it served to
transform the lives of countless people in my community, whose world would be a
little less bright, less full, were it not for Joey.
Matt Kane, who
is beginning senior year at the University of Notre Dame in South Bend, Ind.,
is the brother of Joey Kane.
