With the recent death of actor Christopher Reeves
there is a renewed interest in finding ways to help people with
spinal cord injuries...10,000 occur each year in this country.
Tom Jones has 
lived
with such an injury for 62 years....he has two college degrees,
and has had careers in commercial television, university public
relations, university teaching, and rehabilitation services.
Tom served large TV station as talk show host and on-the-air
sports director. He gives advice to recently injured persons
and their care givers to provide the kind of knowledge they need
to start recovery. He is also very critical of some in the medical
profession who don't know how to treat those with spinal cord
injuries who are aging. When Tom was first injured in 1943, he
was given a one in 10,000 chance to live a year. He has been
married to a beautiful woman, who also uses a wheelchair, for
46 years. Tom feels his book tells those who have never known
what it is like to live a full and complete life in a wheelchair
just what is involved. He and his wife have traveled to South
Africa, Canada and to almost every state in the US. He can give
advice to people who use wheelchairs what to watch for when undertaking
lengthy trips. A well-known orthopedic surgeon has said he believes
that every person entering medical school should be required
to read this book.
PageOneLit: Where did you grow up and were
reading and writing a part of your life? Who were your earliest
influences and why?
Tom Jones: I was born and raised in Carbondale,
Illinois, at that time a small Southern Illinois community located
about 90 miles south and east of St. Louis. A railroad town when
I was born in 1937, Carbondale is now well known nationwide for
being the home of Southern Illinois University. The gunshot that
completely severed my spinal cord at the age of six required
a long period of rehabilitation and sole searching about how
to first, survive, and then to allow me to become an active and
productive person. Being a rapid sports fan, most of my early
reading involved books about sports players and personalities.
Upon entering high school, I joined the newspaper staff and remained
there until graduation, serving as the paper's editor during
my senior year. Early influences, of course, included my father
and mother, who despite the great disappointment of trying to
make a life for a high-level six-year-old paraplegic, were able
to instill in me the drive and determination necessary to face
life using a wheelchair. My dad, Carl Sr., made me aware that
it was absolutely necessary to study my lessons, do my exercises
and start preparing myself for living a long life, even though
my first doctor gave me a one in 10,000 chance to live a year
after the injury. My mother, a nurse, developed from her gut
a rehabilitation program that has allowed me to beat the odds
for 62 years.
PageOneLit: The Real Tom Jones: Handicapped?
Not Me details your life using a wheelchair for over 60 years.
You truly have led an amazing life. What inspired you to write
this book?
Tom Jones: I worked on the book for over
five years and wrote it for several different audiences. First,
I wanted those persons with spinal cord injuries to understand
there is life after injury and perhaps they could use my experiences
to help them begin to live a full and rewarding life. Using a
wheelchair is only as limiting as the person in it wants it to
be. Second, I wrote it with the hope that care givers of persons
with such an injury might be able to understand that life is
not over for their son, daughter, husband, wife, whatever, and
they might use my suggestions in the book when dealing with doctors,
nurses, therapists and all those specialists who would soon be
coming into their lives. I also wrote it for the medical profession,
many of whom, I believe, have no idea how to properly treat and
care for this kind of long-term injury. Orthopedic surgeon, Dr.
James Harms, says..."If the book allows a patient or two
to speak up and participate more in a team approach to medicine,
it will be worth all the effort put into it by the author."
I also wrote it for a general reading audience, most of whom
do not realize how much effort it takes for a person to live
a full life, using a wheelchair.
PageOneLit: You have led an extraordinary
life....never letting your wheelchair limit you. You have two
college degrees, you have had fulfilling careers, and you have
had a long and happy marriage. Did you ever go through rough
periods dealing with your spinal cord injury? What have been
the biggest challenges in life?
Tom Jones: I was lucky. I was shot at the
age of six, before knowing how many facets of life most young
people are involved in as they grow up. I always say I became
an old man at the age of six. Until reaching high school years,
my association with my peers was rather limited, so I went to
few parties, did not date or get involved in many of the out-of-home
activities in which most young people participate. Most victims
of spinal cord injuries are teenagers, who have already experienced
the many and varied activities of growing up. It is much harder
for them to adjust to the new and restricted way of living than
it was for me at the age of six. I guess my biggest challenges
were dealing with constant bladder and kidney infections early
in life, drinking 18 glasses of water day to help prevent those
infections and occasionally being embarrassed by wetting my pants
while in high school. By the way, since finding a better system
to deal with bladder and kidney problems, I no longer have to
drink 18 glasses of water a day. My biggest challenge in life,
and it still exists, is to convince the general public that just
because a person uses a wheelchair, that wheelchair does not
identify the individual who pushes it. I would hope that employers
would not automatically assume a job applicant who uses a wheelchair
can or cannot do a certain task. Who would have guessed that
I, using a wheelchair, could be sports director at a major television
station and travel all over the country covering University of
Illinois basketball and football games.
PageOneLit: In your book you describe how
as a TV sportscaster, you would transfer out of your wheelchair
into a regular straight-backed chair behind the desk so that
TV viewers wouldn't realize your were in a wheelchair. You were
told that the station didn't want the viewing audience to feel
they were trying to gain sympathy by showing a staff member in
a wheelchair. When and how did the station change their position
on this? How was it received and how was it for you?
Tom Jones: Starting in 1965, I was the sole
host on a morning show called "SunUp." We were on the
air, live, from 7:30 to 8:00, just before Captain Kangaroo. During
one of the shows, it became necessary for me to move from set
to set while on the air. The only way I could do that was to
move in my wheelchair. Nothing was ever said to me by the station
management, and from then until the day I left the station, I
did not worry about being seen on the air in my wheelchair. I
did, on occasion, receive interesting comments from viewers,
however. Before my chair became visible, I remember grocery shopping
one morning after finishing the show. An elderly lady cornered
me in the frozen vegetable isle and remarked, "I just saw
you on TV and now you are in a wheelchair...what happened?"
She seemed to be surprised that a person in a wheelchair could
work on television.
PageOneLit: You describe in your book the
1962 "wheelchair safari" in South Africa. Tell us about
this experience.
Tom Jones: The long-time director of the
University of Illinois Division of Rehabilitation Education Services,
Tim Nugent, was contacted by a disabled resident of South Africa
and asked to put together a tour of that country by a group of
persons with disabilities. The South African, Tom Knowles, was
concerned about the lack of rehabilitation techniques in his
country and thought such a group of individuals might convince
the governmental authorities to develop a more up-to-date system
for helping those who were either born with a disability or had
suffered accident or injury. My wife, who also uses a wheelchair,
and I were invited to be part of a group of 17 persons with disabilities
and nine able-bodied individuals who took part in what turned
out to be five weeks of wheelchair sports exhibitions, speaking
engagements, meetings with some top governmental and medical
officials and some of the most beautiful scenery I have ever
witnessed. You can't believe the view from Victoria Falls. By
the way, Tom Knowles raised most of the money to pay for the
group. My wife and I spent a total of $500 during the trip. In
order to save on expenses, Tom arranged for all of us to stay
in the homes of private citizens. I will forever cherish the
many friends we made during those visits and to this day we still
communicate with some of the families.
PageOneLit: What advice do you give to someone
living with a spinal cord injury to live a full and rewarding
life?
Tom Jones: First of all, realize you must
change the way you live. You must pay close attention to what
your body is telling you. You must learn to communicate with
and listen to your care providers. You may be in this situation
because of a risk you took. You should no longer be a risk taker.
That does not mean quit living. It simply means you just can't
do what you used to, at least in the same way, so learn how to
live in this different body. Continue to hope that someday medical
science will find a way to fix the break in the spinal cord,
but until they do work at making yourself the best person you
can be while using that wheelchair. When you are old enough and
have learned enough about your new lifestyle, make it full steam
ahead and never, never let others tell you what you can or cannot
do.
PageOneLit: You must have seen tremendous
advances in rehabilitation over the 60+ years that you have been
in a wheelchair? How have things changed since you were 6 years
old and first in a wheelchair?
Tom Jones: I could produce a whole book
chapter on this. The biggest change are the laws that prevent,
we hope, discrimination against persons with disabilities. This
has allowed those of us who use wheelchairs to have access to
many public and private forms of transportation. These laws are
slowly opening up accessible living and work and entertainment
areas for the disabled. College and universities, led by the
University of Illinois, are now more accessible for persons who
are disabled. Advances in the equipment used by the handicapped
is tremendous, allowing us better and lighter weight wheelchairs.
My first wheelchair weighed 50 pounds. When I was injured in
1943, I had to stay in the hospital for almost six months because
there was little knowledge about how to treat or rehabilitate
someone with a spinal cord injury. Today, there are hundreds
of wonderful rehabilitation centers located all over the United
States. Advancements in medication have been tremendous. In 1943,
if my bladder or kidney infection didn't respond to sulfa, my
temperature could go up to 108 and I would have died. This was
before penicillin. Now, spinal cord injured folks live as long
as everyone else, due in part to the many miracle drugs available.
PageOneLit: The Foreword of The Real
Tom Jones: Handicapped? Not Me is written by Pulitzer Prize
winning film critic, Roger Ebert. Tell us about the long friendship
between you and Roger. How has he influenced your life and you
his life?
Tom Jones: I first met Roger Ebert when
he was a sophomore at the University of Illinois. Roger, who
was working at the Daily Illini newspaper, was selected by Tim
Nugent to join us on the South African tour and serve as the
reporter for the group. He wrote countless stories about what
we were doing and sent them back to papers in Champaign and Urbana.
Roger and I have stayed in touch on an occasional basis over
the years, and when I decided to write the book I thought it
might help sales if he wrote the foreword. Prior to asking him
to do that, however, I had done him a big favor by providing
transportation in my van for a young lady with a disability who
had been invited by Roger to participate in his first Overlooked
Film Festival, now held every year in our communities. Roger
writes in the foreword that because of the many contacts and
friendships with people with disabilities, he now has a better
understanding of their challenges, problems and triumphs. As
he says in the book's back cover, "This book is a must read
for anyone suddenly faced with such a lifestyle change."
It really is hard to say how we have influenced each other, but
I know I am very proud to call him my friend and I hope he would
say the same thing.
PageOneLit: What do you hope to achieve
with your book? What do you hope readers will take away after
reading your book?
Tom Jones: As I have already answered, I
hope several different kinds of individuals will benefit from
reading about my life. I hope readers will have a better understanding
of what it is like to live over 60 years with a spinal cord injury
and the kind of effort it takes to lead a successful and rewarding
life after such an injury.
PageOneLit: What has been your feedback
from readers?
Tom Jones: From our first book signing when
we ran out of books, to today, I have received countless compliments
and have been asked when I would write another. The letters I
have received from parents of a disabled child or from the many
friends I have made over the years because of my very public
persona, make me feel that, already, the book has accomplished
more than I could have hoped.
PageOneLit:What was the last book you read?
Tom Jones: America by Jon Stewart.
