I'm only a representative of a
much larger group, thoseof uswho
require artificial breathing aids in
order to live. My role here is to share
a bit of my personal experience
of 28 years using a breathing aid.

We ventilator-dependent people
are a groupof individuals each with
our own unique solutions to our
life situations. I contracted polio
at age 19 on mysummerjob, which
was running a horseback riding
stable. This was following my first
year on scholarship atYale. I spent
24 of the next 32 months in sixdif-
ferent hospitals, including the
National Foundation's Respira-
tory Centers in Omaha and Chi-
cago. Initially, I was totally depen-
dent on the iron lung and nearly
totally paralyzed. It took me five
months to get out of the lung. I
still have quadriplegic involve-
ment, and use a motorized wheel-
chair.

Much of my breathing is still
voluntary; that is, if I were to pass

outorbecomeunconsciouslwould
essentially stop breathing. I now
use a rocking bed to sleep on at
night. On trips such as this, I use
a portable chest respirator and a
chest shell. For the first six years,
I didn't know how to gloss0 phar-
yngeal, or "frog" breathe, so I car-
ried a small positive pressure
blower with me with a transformer
in case I got tired or had to cough.
If I needed to, I'd just plug into the
nearest outlet to let the blower
breathe for me.

But "frog breathing" has really
been a life saver for me and has
made my life much simpler. With-
out frog breathing I have a maxi-
mum vital capacity of 35Occ's.
but with frog breathing I have a
maximum vital capacity of 2800~~`s.
As you may know, frog breathing
is a method of pushing, or "swal-
lowing," mouthfuls of air with the
tongue into the lungs, which then
inflate a mouthful at a time. My
wife brought a book home from

work that showed me how to do it,
and the first time I yelled at her
she was delighted.

My wife and I met when she
was a student nurse at my third
hospital, and we started dating later
when I was in theChicagoRespira-
tory Center. We have two children
- Karen, 19, and Ken, 17. We've
traveled as a family unit all over
the country - from Florida and
Maine to Texas and Colorado,
usually driving, but sometimes
flying. Lil and I spent our 1961
honeymoon in the Bahamaswhere
her dad lived. When airlines
wouldn't let me fly without a doc-
tor's permission, we found a small
island hopping boat that took us
across the Gulf.

Respiratory disabilities haven't
prevented opportunities from pre-
senting themselves in my life
either. I attended college with
the support of what was then the
Division of Vocational Rehabilita-
tion Services, and the March of

51


Dimes National Foundation. Then I
received fellowship support which
led to a PhD in counseling and
rehabilitation psychology. Illinois
DVR hired me to develop and direct
their Residential Evaluation Cen-
ter and Service. Currently, I'm
associate professor in human
development counseling at Sanga-
mon. State University. (The vice
president's comment on my em-
ployment interview was, "I guess
it's what you have to say, not
how loud you say it, that's im-
portant.")
Although we haven't gotten rich,
I have paid more than $70,000
in personal income taxes back into
the economy since 1965.
One of the ironies of my life,
which I think has implications for
this conference, stemsfrom mybe-
ing turned down for rehabilitation
services by an Illinois DVR coun-
selor in 1957 because I was too
severely disabled to benefit. The
irony in that is that currently I'm
appointed by Illinois Governor
Thompson, as chairman of that
state agency's Advisor's Council.
Illinois and rehabilitation have
come a long way.
Important factors in living my life
with a disability included: 1) good
medical care and planning in the
early stages of recovery, especially
by the National Foundation of Res-
piratory Centers; 2) ongoing sup-
port and respiratory equipment,
provided, again, by the National
Foundation and Life Care Systems;
3) an effective social support sys-
tem, including first, my wife and
family, and then of course, friends;
and 4) an opportunity to live in the
community as anybody elsewhere
I can have control of my own life.
The essential lesson to learn
from that counselor 25 years ago
is: Don't let your perception of
the severity of a young person's
disability today limit his or her
potential for tomorrow.