I appreciate your comments about my research. Knowing that listserves
are made up of people with varying types of disabilities, family
members, or people interested in disability issues for one reason or
another, I was wondering how long it would take before I was attacked
for the population I choose to study....it didn't take long. Please
keep in mind that I have a committee of university faculty members that
provide guidance and "recommendations" about the direction of my
research. In order to complete this degree I must satisfy their
requests...whether or not if I agree. I would like to respond to some
of your comments.
> It seemed in your research...kids with SCI and their parents SIMPLY ARE OF NO INTEREST. Perhaps this should change.
During the meeting where I proposed posting my questionnaire on the
internet I recommended including children, although my thinking was more
around beginning with the ages of 10-13. My idea was not accepted.
It was thought that this would be too wide of an age range for this
particular study. Children have different developmental issues to deal
with than do adults and this could skew the results. Unfortunately, it
would complicate the whole process too much if every age were included,
and I have limited experience practicing research. Thus, limited system
resources (on my part) would have resulted in system failure.
I was injured at age 20 and have focused my studies, up to this point,
around issues related to adults with SCI. I am more familiar with the
issues of adults than I am with children. I agree with your point of
view that more research needs to directed toward children with
disabilities, as well as parents, women, and other minorities. Perhaps
this research, due to voices like yours, will be the springboard to this
occurring. Using the internet as a research vehicle is a very new
field, I expect more to be conducted using this method, thereby giving
you and your daughter an opportunity to participate. A list of all
recommendations gathered from participants of this study will be
compiled and shared with my committee.
> My little daughter is a C-1 to C-4 quad since a car accident in 1995 - she was only 4 when her life, her future, and her childhood was ripped from her. YES, she is still alive, she has a future...(wonder what kind)...and she is still a child (one that will never join in fun games, never sit in a "normal" classroom", one that will NEVER go to a prom, etc. one heck of a "childhood, right?) Perhaps it would be of SOME INTEREST to you and your University to see how small children and their parents feel about THAT.
> Mandy is now 7 yrs old. A REAL FIGHTER, supported by her family, loved and pampered. She drives a power chair via chin switch, operates a computer via sip'npuff, breathes via a ventilator, speaks via a speech valve, goes to the bathroom via chatedrization.
You have every right to be angry. I feel bad for Mandy and you. It
seems that Mandy is extremely fortunate to have a family that loves and
supports her, and will do what is necessary to normalize her life.
> Just...try to imagine a life as a C-1 quad....half machine/half human
> being...JUST TRY TO SEE FOR ONE SECOND THE WORLD FROM THIS
> PERSPECTIVE....C-1's in kids are rare...but they ARE HERE! PLEASE TRY TO REMEMBER THEM...THEY HAVE FAMILIES, LIVES, HOPES TOO...
Well Andrea, you have succeeding in making me feel bad. My intention
was not to make a group of people feel excluded, but to help further the
cause and bring to light the plight of adults with SCI & their spouses.
Maybe Mandy will one day gather the fruits of this effort. I know my
reasoning may not justify, for you, why I choose the population of
adults w/SCI, but I hope you can appreciate my efforts in this area.
You have given me food for thought. I hope that Mandy & you are able to
successfully manage the daily challenges, many of which we have in
common.
Thanks again for your comments.
My best to you, Brent Chase