As many of you know, I spent part of the 1974 and all of the 1974–'75 school year going to school at the University of California, Berkeley. That first year, I lived in a special residence program for students with disabilities at Cowell Memorial Hospital, which was the student health service on campus. The third floor had one wing with twelve students of which ten of us had spinal cord injuries, and four of us had broken our necks playing football.
It was an excellent program and way
ahead of its time for students with severe disabilities attending classes,
living on campus and a pioneer in helping to get educations for students with
When we left for summer vacation,
they closed the door and integrated us into the general population of the
dormitories. At the time, that was unheard of. But, Berkeley had Ed Roberts! Ed
was a pioneer for the disability community, which started with that residence
When I came back to Berkeley in the
fall of 1974, my dad and uncle came with me. We dropped Terry off at McClellan
Air Force Base near Sacramento, and dad spent a few days before he flew back to
I got settled in to Room 118 Putnam
Hall in Unit 1 of the dormitories just off the campus. Sometime during that
year, professor Nancy Crewe, PhD, from the University of Minnesota who was
beginning a Longitudinal Spinal Cord Injury Study, contacted me and she wanted
to know if I wanted to be a part of it.
I was more than anxious to be a
part of it, and Nancy and one of her PhD students flew to Berkeley to interview
me for the first part of the study. While Nancy was at the University of
Minnesota, she interviewed me several times in person, or sent out forms for
her study on our successes, failures, frustrations, education, employment,
general health and a host of other concerns.
It was always interesting to know I
was a part of a study of such importance she would fly halfway across the
country to meet me for the first time. Once I moved back to Minneapolis, I
worked with her and one of her PhD students, Jim Krause. Jim is also a C5-6
quad, and we have many similarities.
Nancy eventually moved to Michigan
State University and left the study in Jim and his associates very capable
hands. Once Jim received his PhD, he moved on to Shepherd Spinal Center in
Atlanta where he worked for several years on the study. Eventually,
Jim moved to the Medical University of South Carolina where the survey is being
worked on today.
That is what brought me to this blog post and the meeting Richard Aust,
Program Coordinator II, from the Medical University of South Carolina. Tuesday, we spent
three hours with four participants in the study, of which I was the only one
who has been with it since the beginning.
We had an interesting conversation, and he had an agenda with questions he
wanted to get through. There were periods during our discussion where I made it
rather difficult to keep on his agenda!
He did come up to me during our break and thanked me for my input. I believe
he got a little more from me than what he was expecting! I told him, "I
thought that is why you wanted me here was to give my opinion. Am I
correct?" I gave him a polite smile and he agreed with me. The entire three
hours was videotaped so Jim will be able to see just what took place.
It just so happened, I had several of my books with me and gave the other
three participants and Richard a copy to share with Jim. Jim already has read
it in ebook form, but I want them to have paperback versions and see if we can
get one version or the other into the hands of the remaining participants.
At one point, I asked Richard how many of the original one hundred
participants were still involved in the program. Care to take a guess? I was
pleasantly surprised when he said, "Forty-two of the original one hundred
are still participating!" After nearly forty years of living with spinal
cord injury, 42% of us are still alive and able to fog a mirror!
One of the participants had his personal care attendant with him, and I
noticed she was already reading the book before our session was through. I
received an email from him the next day, and he said his attendant thought my
book was "Wonderful!" He said he was going to read it now. I will
take that endorsement any day!
On my way out of the building, I ran into another friend and his wife who
were waiting to go into the next session. I am anxious to see what this round
of information will tell the researchers about our study.
I look forward to your comments.