Nightline Program
lorraine
I have to vent my feelings about the Nightline Program tonight. I am 5'4"
in height. Does that make me average? I think it is a relative thing.
There are groups who stature is larger and I would be a short person, or
in a smaller group I would be lagre. Isn't it MORE important to look at
what I CAN do and accomplish than look at whether I need to bend or use a
step stool?
In 1977 I was expecting what I hoped would be a normal, healthy baby.
My alpha fetal protein levels were too high for my dates and I was sent
for a sonogram which was then still experimental for use in pregnancy. It
was free and part of a genetic screening research program. I didn't find
this out until I got there. My Doctor had sent me and told me it might
tell him that I had a large baby or that I had miscalculated my dates.
Upon arrival we were asked if we would terminate when a neural tube defect
was detected. Well, naive as we were we didn't even know what all of
those things are. We couldn't even begin to think of not having someone
we had already come to love. One of the concerns I had was that they had
no way of telling how serious each problem was. You could have an
ane4ncephalic baby with no hope of survival or you could have a child like
my friend Donna or Glenn who both have spina bifida and are both grown
adults with happy families and children of their own. I would never abort
a Gleen or Donna and science can't tell you all the answers. We decided
to deal the hand of cards we were dealt.
It's 1996 and the results of that pregnancy are 18. In August my son will
leave for SMU and his twin sister will leave for Johnson & Wales
University in September. The protein levels WERE too high for ONE baby,
but not for two. Are they NORMAL? Many times I have doubted this. Are
they PERFECT? Absolutely not! What human fits into a perfect description
throughout their life?? None that I know of. In a week and a half
they'll receive their high school diploma - it will be a wonderful
milestone in life. They almost DID NOT FIND the second baby during my
sonogram. What if we thought we had a single defective baby and had
terminated the pregnancy? We would never have know the laughter, ther
tears, the first teeth, the first baby tooth lost in an icream cone in
first grade, boy scouts, girl scouts, my daughter's science faire project,
my son's building and disassembling almost everything, the hugs, senior
prom night....I could keep writing for years about what we've been blessed
to experience.
When my daughter was young she needed glasses to see better, she's had
problems learning in school, yet now she has not one, but TWO scholarships
for college. According to the school district she is learning disabled,
yet experience has taught us that her LEARNING STYLE and the TEACHING
STYLE used here are not compatable for her. She has had to teach herself
to create a learning style to function in the world she has to live in.
Somehow I think that makes her smarter than the educators who call
themselves her teachers. What if they discover a way to detect a learning
disabled gene. Sure it's cost more money for her than her brother - she's
needed more medical care, she's needed educational theraphy, speech
therapy, much of which was covered by our insurance. Insurance that WE
earned and WE bought and paid for. Why can't WE choose to do what we want
with it. If I had been told I would have a child with dwarfism then WE
would have made our choice to teach our child to adapt to vertical
challenges. SUre there would be more medical costs, paid for by OUR jobs
and OUR insurance that WE PAID for. When you buy something, such as a TV
you can choose how to or not to use it. If you have car insurance and
dent something you can put in a claim or choose NOT to use your insurance
and pay out of your own pocket, the same is true if you go to a Doctor.
Nothing REQUIRES you to use insurance that you have bought and paid for.
I believe that insurance companies have NO RIGHT to tell anyone what type
of child they'll choose to have or not have.
There were comments made on the program regarding some dwarfs who said
they did not like their life. Perhaps parents would be looked at a "bad"
parents for allowing a dwarf to be born when we have the technology to
prevent this. Perhaps future dwarf children may resent their parents to
subjecting them to such a life. Well what is your alternative to THAT?
If you have NO life I guess you can't complain. What about parents who
are "average" height who have a dwarf child? WIll that child have to go
through life labeled as an undetected mistake? Will the parents and child
be penalized for NOT having testing? Will we ALL become regulated into
having genetic testing done for improper eye color???
Granted there does seem to be merit in dwarf testing for two dwarf parents
who risk a terminally doomed baby. But that is THEIR decision. If they
are taking care of their own responsibilities for their choices, then let
them have their choices.
My son has green eyes like me. My daughter has her dad's warm brown ones.
My husband wears glasses, should be critized for bringing a child into the
world who needs extra medical costs for contact lenses? How DARE people
suggest a dwarf father and average mother should be prevented from or
critized for deciding they'd love a child who looked just like his dad! To
see yourself in your children - to have someone who looks like you is the
greatest gift and miracle.
I think we have some dangerous ideas floating about with regard to who
should have access to our genetic privacy. "Average" height people have NO
RIGHT to the genetic information of ANYONE!
I thank Nightline for bringing this information to someone like myself who
is uneducated about dwarfism. I am now much more aware of how damaging
loss of privacy can be. They have pointed out the dangers of judgement
new techology subjects us all to. If I pass you in my life and your height
is different than mine I hope you won't dislike me or judge me poorly
because I'm different.
Lorraine
eka...@server.iadfw.net
Dan Kennedy
Dear Lorraine --
Thanks for your excellent posting. Alt.support.dwarfism has been replaced
by the Dwarfism Mailing List, and I have forwarded your message there. If
you would like to join the discussion, take the following steps:
1. Send e-mail to list...@ucsd.edu
2. Leave subject line blank, or just put anything you'd like in it; it
doesn't matter
3. The message should read "subscribe dwarfism" (don't actually use quote
marks)
4. You will now see all messages posted to the list. To post a message
yourself, send e-mail to dwar...@ucsd.edu. Please be as explicit in the
subject line as possible, since it's a very busy list.
5. To leave, repeat steps 1 - 3, substituting the phrase "unsubscribe
dwarfism" in part 3.
Take care,
Dan Kennedy