November 9, 2003
FIRST PREBYTERIAN CHURCH
ATLANTA, GA
DISABILITY AWARENESS SUNDAY
Mr. Charles Shaffer, Marcus Institute
It
is an honor to visit this great Church on this Disability Awareness Sunday, and
Harriet and I are especially pleased to be with our dear friends, George and
Barb Wirth. George, Barb and I have
much in common in that we all graduated from University of North Carolina at
Chapel Hill, and Harriet and I have followed their extremely meaningful ministry
in Atlanta and beyond for many years.
We often listen to George’s sermons at 7:30 a.m. on Sunday mornings on
WSB radio, and it is exciting to be here in person.
1.
My First Awareness of Disability.
“Libby Lindsay”. My first awareness of a
“disability” came when I was a child growing up in Chapel Hill in the early
1950s. We had just moved to Chapel
Hill, and we heard that our new next-door neighbor, Libby Lindsay, a beautiful
young wife and mother of a two-year-old boy, had been stricken with polio and
was being treated in Warm Springs, Georgia. The entire Chapel Hill community was deeply
saddened by this occurrence, for Libby Lindsay was a ray of sunshine, and now
she was struggling for her life in Warm Springs.
Four months later Libby Lindsay returned to
Chapel Hill. I was ten years old at the
time. I remember one neighbor remarking
very sadly that Libby had been a magnificent dancer, and that it was so
sad to see her confined to a wheelchair.
And frankly I was fearful of meeting someone so confined, but when I met
this beautiful woman, she reached out to me and our entire family with such
friendship and joy that we soon lost sight of the wheelchair. Libby’s wheelchair was her opportunity to
show how the human spirit can triumph over the most severe disabilities,
even though she was confined to the wheelchair for fifty years.
2.
Sally Nunnally. After Harriet and I had
lived in Atlanta for several years, we met another radiant Libby Lindsay. And she is Sally Nunnally, your beloved
parishioner. Both Libby Lindsay and
Sally Nunnally have turned an unfortunate disability into graciousness and
triumph. They are lights of the
world.
3.
Emmett Houston. And there is another light of
the world in our family. He is Harriet’s
father and my father-in-law, Robert Emmett Houston, now deceased. He graduated from Yale and was a Rhodes
Scholar, and had a brilliant career ahead of him as a lawyer in New York. While in service during the Second World
War, he was stricken with a terrible brain tumor. His recovery took five years.
The doctors thought that he would not survive. He lost his voice and his ability to walk, but through his
courage he finally overcame all of these disabilities to live another 40
years. He had to give up his trial
practice in New York and move back to Greenville, South Carolina where he
became a prominent tax lawyer. In
overcoming his brain tumor and the resulting disabilities, Emmett Houston was
also a light of the world.
III. CHILDREN WITH SPECIAL NEEDS
4.
The Marcus Institute. For three months now, I have
had the privilege of being the President and Chief Executive Officer of the
Marcus Institute. It was founded by an
extremely generous gift of Bernie and Billi Marcus, and this Institute treats
children with developmental disabilities ranging from the mild to
the severe, such as autism, severe injurious behavior, cerebral palsy,
epilepsy, feeding disorders of infants who refuse to eat, and many others. One program is an Early Intervention Program
to identify and treat autism at an early age.
Another is our treatment program for fetal alcohol syndrome.
This Institute is located on Briarcliff Road,
near Emory. Over the last twelve years,
it has treated over 18,000 children from all counties of Georgia and
many States beyond. We are not a
hospital. Our treatments occur from
9-5, five days a week. We also have a
School for some of our children.
Because of the passion and
generosity of Bernie and Billi Marcus, this Institute, like Libby Lindsay and
Sally Nunnally, is a triumph of the human spirit.
5.
Why I Am Working at the Marcus Institute.
I have been asked a number of times why I
left the law practice after 36 years to begin work at the Marcus
Institute. The first reason is that
Harriet and I are blessed to have three healthy children. In addition, we are blessed to have six
healthy grandchildren. Those three
children and six grandchildren provide nine overwhelming reasons why I am at
the Marcus Institute.
In addition, when our oldest daughter,
Caroline, was one year old, she was crawling and accidentally fell on a red
ballpoint pen which penetrated her right eye.
She was rushed to Egleston Children’s Hospital, had emergency surgery,
and Dr. Tom Manchester saved the sight in her eye. Harriet and I will never forget our good fortune that the
emergency surgery at Egleston was a success.
So you see, my work at the Marcus Institute
is only a very small measure of the blessings of the children and
grandchildren in our lives. Then my
work is the least, the very least I can do.
6.
The Trip of the Family to Italy (Holland).
At Marcus we treat the children and support
the family, for a family of a child with a disability endures double
pain: that for their child and that of a parent. The anguish of families is strikingly
described in an article written by Emily Kingsley. Here is her story as a parent:
“It’s
like this – when you’re going to have a baby it’s like planning a fabulous trip
to Italy. You buy a bunch of guidebooks
and make your wonderful plans. The
Coliseum, Michelangelo’s David. The
gondolas in Venice. You may learn some
handy phrases in Italian. It’s all very
exciting.
After
months of eager anticipation, the day finally arrives. You pack your bags and off you go to Italy –
several hours later you land and the stewardess says: ‘Welcome to Holland.’
Holland?!?,
you say. What do you mean Holland? I signed up for Italy. I’m supposed to be in Italy! All my life I’ve dreamed of going to Italy.
But
there’s been a change in the flight plan.
They’ve landed in Holland and there you must stay.
The
important thing is that they haven’t taken you to a horrible, disgusting,
filthy place, full of pestilence, famine and disease. It’s just a different place.
So
you must go out and buy new guidebooks, and you must learn a whole new language
and meet a whole new group of people.
It’s just a different place.
It’s
slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your
breath, you look around… and you begin to notice that Holland has windmills…
and Holland has tulips. Holland even
has Rembrandts.
BUT
everyone you know is busy coming and going from Italy… and they are all
bragging about what a wonderful time they had there.
And
for the rest of your life you will say, ‘yes, that’s where I was supposed to
go. That’s what I had planned.’
And
the pain of that will never ever go away because the loss of that dream is a
very, very significant loss.
But…
if you spend your life mourning the fact that you didn’t get to Italy, you may
never be free to enjoy the very special, the very lovely things… about
Holland.”
This analogy defines the severe family
dimension of children’s disabilities but, of course, there is the other
critical need to support the child.
7.
Children with Disabilities. To continue this analogy,
when this child is born as the parents reach Holland, the parents had each
other for support, and other family members, and friends. They were adults. But what of this child who has just come into this world?
There is a serious need for the treatment and
education of children with developmental disabilities in Georgia. Approximately 165,000 children in Georgia
have a developmental disability. 15,000
Georgia children have more than one developmental disability, and between 1,000
and 2,000 children in Georgia are severely disabled.
Many children at the Marcus Institute are severely disabled.
And as you see these fabulous young children
at the Marcus Institute, you wonder what is going on in their world?
IV.
AUTISM: “IN THE END IS MY BEGINNING”
8.
“NOBODY NOWHERE”, BY DONNA WILLIAMS.
Well, if you are interested in autism, I
highly recommend a book entitled “Nobody Nowhere, An
Extraordinary Autobiography of an Autistic”. It is written by Donna Williams, who tells of her ongoing
struggle with autism. Ms. Williams
describes her life as “a story of two battles: a battle to keep out ‘the world’ and a battle to join it.” And she writes of “the casualties in her
private war against others.”
Ms. Williams makes an interesting comparison
between Albert Einstein, and her life as an autistic. She compares (1) the difficulty of Albert Einstein’s splitting
the atom and (2) the difficulty of communication with an autistic
person. She states that Einstein
“taught us that there is a point at which all things can be broken down
into the minutest of parts and it is at this point that something can pass
through a seemingly solid object.”
Communications with autistic people can be similar to breaking through
“a seemingly solid object”.
(205-206) But Ms. Williams is
proof that it can be done.
In describing her breakthrough, Ms. Williams
referred to the fabulous poem, “Four Quartets” by T.S. Eliot. In that poem, the poet begins Part II with
the phrase: “In my beginning is my
end.” That theme is repeated in
various parts of the poem until at the end of Part II “in my beginning is my
end” T.S. Eliot reverses the theme and concludes: “In my end is my
beginning”.
Poignantly, Ms. Williams states that, in her
effort to penetrate the “solid block” between an autistic person and the world,
she “…started at the end and tried to work my way back.” Thus in the words of T.S. Eliot, her end
was her beginning, and as an adult she triumphantly overcame the emotional
darkness of autism.
V. “I CHOSE YOU”
8. “I Chose
You”. In Chapter 15 of the Gospel according to
John, verse 12, the Gospel writer discusses the challenging commandment
of Jesus “to love one another as I have loved you”. And in verses 16 and 17, Jesus discusses
why this difficult task applies to all of us, saying:
“You Did Not Choose Me, But I Chose You. . .
To Love One Another”.
People with disabilities did not choose the
disabilities they deal with, but they deal with them courageously and
heroically. In my judgment, Jesus
Chose People With Special Needs To Be The Lights Of The World To Show Us How To
Love One Another.
VI. BEING CHOSEN TO BE LIGHTS OF THE WORLD
9. Fred Rogers’ Story about the Track Meet Involving Disabled Children.
So how do people with special needs show us
how to love one another?
You may have heard the story of a 100-yard
dash event at the Seattle Special Olympics as described by the
children’s television star, Mr. Rogers, in his commencement address at
Dartmouth several years ago. Here are
his words about that foot race involving children with special needs:
“Well, for the 100-yard dash
there were nine contestants, all of them so-called physically or mentally
disabled. All nine of them assembled at
the starting line and at the sound of the gun, they took off. But not long afterward, one little boy
stumbled and fell and hurt his knee and began to cry. The other eight children heard him crying; they slowed down,
turned around and ran back to him. Every
one of them ran back to him. One little
girl with Down Syndrome bent down and kissed the boy and said, “This’ll make it
better.” And the little boy got up and
he and the rest of the runners linked their arms together and joyfully walked
to the finish line. And when they did,
everyone in the stadium stood up and clapped and whistled and cheered for a
long, long time. People who were there
are still telling the story with great delight. And you know why? Because
deep down, we know that what matters in life is more than winning for
ourselves. What really matters is
helping others win too. Even if it
means slowing down and changing our course now and then.”
These 9 contestants showed everybody in that
stadium how to love one another. Each
of the 9 made the others win too.
10. Halloween at the Marcus
Institute.
At the Marcus Institute on Halloween 2 weeks
ago, I saw another example of children with special needs showing others how
to love one another. I wish that
you could have been there. During the
middle of the day, our severely disabled children were escorted on a special
trick-or-treat mission: two clinical
specialists with each child.
The children visited each office at the
Institute, either in a wheelchair, or help struggling to move. When they arrived in my office, if they
could verbalize “trick-or-treat”, they did, in mumbling terms; if not, their
clinical specialist said, “trick-or-treat” for them. At that point, each child was positioned by the attendant to face
the host and to reach out for a gift that had been pre-wrapped by our
educational advisor. No candy, for they
are all on strict diets.
Now, the age ranges for these children were
10 to 16 years old. And consider their
gifts: a rubber boat for a child
who is just beginning to visualize objects; a pack of crayons for a
child who is just beginning to draw pictures; and a book with simple words
for a child who is just beginning to read.
These very basic gifts bought joy to
these children, and they thanked us usually with sign language for
“thank you” (hand to lips, then lower hand to other hand and reach out). You could see the “thanks” in their eyes;
and in looking into the eyes of a child with disabilities, it does not
matter who you are, or what you have done, or where you
come from. For the child, it is not who
the child is or what the child has done or where the child comes
from. In that communication,
each child brings something “new” to us, and what is “new”
is a lesson in how to love one another.
Halloween at the Marcus Institute was a
phenomenally uplifting experience. One
of the young children reached up and hugged my wife, Harriet. It was a moment we will never forget, for during
Halloween at the Marcus Institute, “WE GAVE EACH CHILD A SIMPLE TRICK-OR-TREAT
GIFT, AND THEY GAVE US A GLORIOUS LIFETIME EXPERIENCE”.
People with special needs
are the lights of the world.
11. “Good Job”.
I
want to also mention the young college graduates who are teachers and clinical
specialists at Marcus. When a child at
the Marcus Institute shows even the tiniest improvement in a task, the
child is met with a chorus of “good job” comments by these talented
people who are devoting their careers to treating and caring for these
children. They provide positive
reinforcement over and over again. It
is a joy to see. “Good job” for
looking at the person talking to you they say; “good job” for trying to
speak; “good job” for reaching out to get the trick-or-treat gifts; “good
job” for verbalizing “thank you”, or by using sign language to say “thank
you”; “good job” for opening the door, or for trying to open the door.
VIII.
CLOSING
12.
John Gardner. In a recent book by the famous educator and
politician, John Gardner, he writes:
“Life Isn’t
A Game That Has A Final Score. Nor Is
It A Riddle That Has An Answer. Nor Is
It A Mountain That Has A Summit.
Life Is An
Endless Unfolding…”
And in the endless unfolding
of the lives of people with disabilities, amidst all of the difficulties, they
“are chosen” by God to be lights to the world on the importance of loving
one another. And the light shines not
on the final score…not on the answer…not on the summit…
The light shines on those
instances where “loving one another” IS the final score…IS the
answer… and IS the summit.
In the awakening light of
people with disabilities, (1) everyone crosses the finish line at the same
time; (2) God’s grace through people with special needs overrides any
wheelchair…and (3) the accolades of
“good job” for even the simplest of tasks is better than any thundering
applause in a stadium.
And, in the words of T.S.
Eliot, the light of people with special needs confirms that every end is A
BEGINNING.
13.
All Things New.
And in closing I want to refer to one more
passage from Scripture. II Corinthians,
Chapter 5, Verse 17. You know that
verse well:
“Therefore if anyone is in
Christ, he is a NEW creation.
The OLD has passed away; behold, all things have become NEW.”
When people have the benefit of knowing
people with special needs, the meaning and intent of II Corinthians 5:17 is
fulfilled…because
People with special needs, being chosen by
God, have the unique capacity “to make all things new”.
Charles
M. Shaffer, Jr.