THOUGHT PROVOKER 24

What Shall The Babies Be?

     "How is my baby?" The new mother asked of the doctor who worked over
she and her newly born infant son. Her thoughts moved from the labor that
had just passed to the concerns of the now and the future. In this moment
of high emotion, a kaleidoscope of images crossed her mind.

     “Doctor, how is he?" She wasn't ready to ask directly yet about the main thought that was uppermost on her mind. Will the blindness manifest in this child? Maybe he won't be blind. Will he be visually impaired? Will he be normal, fully sighted?

     “I want to hold him, feel his warmth. Are you ready to hand him to me yet?” Waiting was hard. Of course, doctors can’t always tell about eye problems at this early age. Will his future be functionally and socially handicapped by the characteristic of blindness?

     “Ahh, my lovely, lovely son." She cooed into a perfect tiny ear. All the discussions she and her husband had, the genetic counseling, the family pow-wows. and the "almost" battles! Will all those stressful times come back to haunt her?

     “Honey, What do you think of our son?” She said, as she and her husband’s hands met on the tiny body of their son. Had she and her husband made the right choice?

RESPONSES
e-mail responses to newmanrl@cox.net

**1. “This is an issue that we had cross our minds when we made the decision to
have a child. It did not stay in the forefront for very long. Both of us
are blind, we are comfortable with our situation in life, but certainly
neither of us would wish blindness upon anyone, especially a child. We knew
that the likelihood of passing either of our conditions on directly to our
child was very limited, but that there was a good chance that at least one
of our conditions could directly affect the life of a grandchild. We
discussed the issue thoughtfully, and here is what we based our decision
upon. We firmly believe that being blind is respectable, at times a bit
inconvenient, and socially challenging, but beyond this it is not any more
or less wonderful than any other life. Sighted parents have and raise
sighted children everyday, and in spite of what the media would attempt to
lead us to believe about the “increasing number of dysfunctional families “
out there, the majority of them do a pretty good job of being parents.
Blind parents have and raise sighted children everyday, and in spite of what
a lot of people seem to believe, and the media would like us to believe, the
majority of them do a very good job. A lot of blind children happen to have
sighted parents, who love their children very much, and do their best to
raise them, but honestly do not themselves have a good working knowledge of
the alternatives or a strong philosophy of blindness. These parents
usually turn to supposed experts in the raising of blind children, and
sometimes they get lucky, and their children receive the kind of training
and philosophy that will allow them to grow into competent adults. Of
course, this is not the case for many parents of blind children, they
instinctively over protect their children, either do not receive good advice
or ignore this advice, and their children grow up with a decided
disadvantage. Some find out the truth about blindness later in life, but
many are not so lucky. So who is better qualified to raise a blind child,
or to help their own sighted child to understand the needs and abilities of
a grandchild who happens to be blind. I believe that blindness is only a
secondary issue in my life, and that it should be only a secondary issue in
any blind person’s life, and it is no excuse for denying yourself the joy of
having children, if you truly want to have a child. I also believe that it
carries a very serious responsibility, to make certain that you are fully
prepared to be a parent, in every way. Sighted parents should not place
extraordinary responsibilities upon their young children, or shift their own
responsibilities on to them, and nor should blind parents, even though many
in our society assume that we should allow this to happen. It really drives
me nuts when a sighted person says to my three-year-old daughter, “I bet you
are a really big help to your mommy and daddy.” Or they say, “When she is a
little older, she’ll really be able to help you cross streets and get
around.” This of course comes from people who know full well that I teach
cane travel for a living! It takes a lot of strength to have children as a
blind person, not because being blind makes the normal parental duties any
more difficult, but because much of the rest of society just doesn’t get it. The most important duty you have as a blind parent is to make sure that your
child does get it, and that isn’t easy. For a sighted person that is
concerned that for some reason their child may be blind, before you make a
decision that may deny you one of the greatest joys life has to offer,
please find out the truth about blindness first. If you already have a
child that is blind, the greatest act of love you can give that child is the
opportunity to learn the truth about their blindness, not from just one so
called expert, but from as many people as possible, especially blind people.

By the way, eye doctors are not experts on blindness.”

Jeff Altman (Lincoln, Nebraska USA
debandjeff@inebraska.com)

FROM ME: “…The truth about blindness… …philosophy of blindness… If these are keys to making this work well, let us watch for all those elements of their makeup.”

**2. “This one is actually one on which I have very strong opinions. My wife and I
have thirteen children, 6 boys and 7 girls whose age’s range from 1 through 20,
so you can already tell on which side of this particular fence I sit.
We believe that children are a direct gift from God into a home, that He always
knows exactly what He's doing, and that He never makes mistakes. If He should
choose to give us a blind child, therefore, then He must have a very good
reason for doing that. Perhaps it's as simple as the obvious fact that a blind
parent ought to know best how to raise a blind child.
When my wife was pregnant with our first child, it was our doctor, and not we
ourselves, who got all worried about whether or not our child would inherit my
blindness. It was he, and not we, who insisted that a bunch of genetic analysis
be done. After all of their intense research, the final conclusion was that
they couldn't tell. Given this uncertainty, he then had the absolute audacity
to take me aside privately and ask me if I wanted the pregnancy terminated,
i.e. if I wanted him to murder our unborn baby, to avoid the possibility that
he might turn out to be blind. I most readily and emphatically answered NO.

Between then and the time our baby was born we moved from Vancouver to Ottawa,
but, the next time we were back in Vancouver, we made a special visit to that
doctor to show him the child he wanted to kill. It brought him to tears.

God hasn't, so far, chosen to entrust any blind children into our care, but He
has given us a child with cerebral pulsy. All kinds of people, after his
Birth, were convinced that we'd be through with having children. They worked
overtime in an attempt to scare us regarding the possibility of such a thing
happening again, and wanted us to be oh so aware of what extra hardships that
would mean. We refused to listen to any of them, have had three more children
since then, and wouldn't have had it any other way.

This thought provoker is entitled "What shall the baby be?" My answer is that
the baby already is, not shall be, a human being. It makes no difference at all
whether he will, or will not, suffer from some determinable and/or
indeterminable set of ailments. All that matters is that his parents will raise
him, respect him, love him, protect him, teach him, listen to him, and in all
other such ways week to do what is best for him. They can also expect and enjoy
the assistance of God Himself, which has indeed been our experience, should
they endeavor to do the counterculture thing and teach him to know and to
love his Creator.”

Dave Mielke (Ottawa, Ontario, 856 Grenon Avenue, Phone: 1-613-726-0014
dave@mielke.cc)

FROM ME: What does termination of the pregnancy show for the thoughts of that doctor? What is the general attitude toward blindness in the medical field?”

**3. “I have a daughter who is almost 4 years old. There was a small chance that
she would inherit my blindness, but there wasn't any way to tell while she
was in utero. My husband and I felt that if she were blind, we would deal
with it. As it turned out, my daughter is sighted. Having a blind child
is not the worst thing in the world. If the child is otherwise healthy, there are
many advances in technology and in education that can help give a blind
child a normal life. I'm not saying that it will be easy raising a blind
child, but there are many opportunities open to that child which were not
available 25 years ago.

If there is a chance of blindness being passed on to a child, the parents
need to really think about how they would feel if the child were born
blind. Would the blind parent feel guilty? Would the other parent feel
resentment? These are issues which must be dealt with prior to conception.”

Janet Ingber (Queens, New York USA)

FROM ME: “How might a couple examine potential issues; where, with who?”

**4. “I live in When I got married, I was faced
with the thought that while my blindness was not considered hereditary, my
wife, who was sighted, had a long history of blindness in her family. She
had two cousins and one uncle who were blind, but I do not know what the
diagnosis was. One of the thoughts that I had though was who would be
better qualified to raise a blind child than I and a wife who had experience
with blind relatives. I could only hope that this did not happen though.

My next thought was that I would leave it is God's hands and pray for the
best. I was gifted with four normal children and so far the only problem
with any of them is that they wear glasses. Hope this is the type of
response that you are asking for.”

Marion Fisher (Bellflower, California USA)

FROM ME: “Note how many blind couples or couples with at least one blind person are saying that they are best equipped to handle a blind child versus those who are blind and say their experience with blindness is their main reason for saying no to children.”

**5. “First lets look at the mother and her first child and knowing that
both her and her husband are blind and the worry that blind may be passed
on is of great concern to her and the new dad.
You can tell by just the thoughts that go through her mind that she
is worried and her pain is of the least of her problems and her concern
is of the child and the wait and want to hold her new child. Yes she is
scared and with all the hope in the world a new born is hard for a Dr. to
make a positive determination as to the condition of the eyesight.
Yes with all the tech. know today the most important thing is the health
of the child first.

First we can see the worry of the mother and yet the wanting to know
facts and all the bad things that go through a person’s head and we should
also look at it as if all children are normal and that the bad things can
go away and hope for the best. First lets get the mother back to earth
and reassure her that all is well and that the Dr. is doing his best for
the newborn and her at the same time.

It was not until after the Dr. had handed the child to the mother that
she felt good and comfortable knowing that her child was healthy and in her arms.

This is a topic that can be used to say first lets keep everything in
perspective and not jump the gun and the waiting game is so hard but one
that at times like this is very hard not knowing.

After rereading this and all and looking at it other then a father and
grandfather of 2 disable grandchildren and knowing what the mother is
going through I still feel that the health comes first for all concerned
and blindness and other disabilities come second.”

Willie Burton (Arkansas USA)

**6. “I wish that blindness was all my Ginny has for I would have her now....a
bouncy and alive nine year old. So to me, inheriting my RP would not
be the "horror" but the Trisomy 19 that Ginny was born with. It was a
death sentence for her with no hope of cure, treatment or therapy. No
surgery, no medicine, not even an experimental something existed except
for that mysterious Genome Project to prevent genetic triplication in the
future. But not in time for my precious Ginny........

So, even though we know of the possibility of RP or even Usher's
occurring in our two other children born later after Ginny's passing;
somehow that possibility did not seem as devastating to us (myself and
my sighted husband) as the gut-wrenching declaration, "Your baby will
die and there is no hope for her to ever survive, much less be anymore
than be independent of a hospital's care".

So, I don't think I am the right person to answer this question. To me,
visual impairment is an inconvenience and you have the option to make of
it what you will..... whereas there are some medical diagnoses that give
you no options and in my daughter's case, no hope for a long life to
make the world shine.”

Debra Streeter (Victoria, Texas USA
zaria797@tisd.net)

FROM ME: “In part, I wrote Debra back and said, ‘I will use your response, it makes a very strong point when we talk about vision loss, it being one that
is not life threatening, not one to life itself, but one we do have
choices on.’”

**7. “I believe that all parents want their children to be happy, healthy
babies. This includes a hope for normal vision. Even if both parents are
blind and live normal, productive lives as blind people, I think they
naturally hope that their children won't have the same difficulties to
overcome as they've had during their lives. This is true for any number
of circumstances. Parents who have had to struggle financially all their
lives hope that their children will have life easier and be financially
secure. Parents who have not had the advantage of a good education hope
that their children have the opportunity to go through college and make of
themselves anything they choose. Likewise, I believe that blind parents
hope that their child will have normal vision. However, if that's not the
case, then the blind parents will be able to deal with the situation and
teach their child the skills of blindness from the beginning; still making
life's road as easy as possible for their son.”

Cynthia Handel (USA)

**8. “All children born free of any and all illnesses/diseases/conditions is the
hope and wish of any parent or parent to be I've encountered; myself
included.
If every child that had risk of any type of ailment were never born the
world would not be the same as it is today. No Hawking, no Beethoven, No
FDR etc.
With genetics, and being able to isolate genes and chromosomes, we have the
technology to remove/reduce the risk of some ailments. Scientists and
Doctors DO NOT KNOW what else is being removed/added when a gene is altered.
Hypothetical: Gene for Alzheimer’s has been isolated. Perhaps Scientist
alters the gene so the child to be has 0 risk of Alzheimer’s at the age of
60, 70, or even 80, but in that alteration of that gene, violent tendencies
in adolescent years are increased to 75%. (The above scenario is a personal
pondering, not based in fact at all!!) Does the scientist alter the
alzheimer's gene or not? Who makes the decision, parent or doctor? If the
alteration was done who would be held liable for the child's to be future
actions if at age 13 the child murdered someone -- parents? doctor?
geneticist?

Hypothetical #2 Same scenario Gene for alzheimer's can be isolated and
altered. In this case, intelligence has a possibility of being reduced, but
how much reduction in undetermined? Take the risk of mental retardation or
not?

Hypothetical #3: A couple knows there is a 50/50 chance there child will be
blind at birth. We are getting closer to real world bionics (Cochlear
hearing implant, vision chip). Take the chance and if the child is blind at
birth hope for bionics?
At present we can not go back in time and redo what's been done, and if we
could, more than likely our present and our future would be altered (at
least according to present day theory). That said human tinkering has done
some wonders (world travel), and has caused some catastrophes (global
warming is in part human caused).
Genetics is an extremely high form of tinkering. One can approach this
debate from a medical perspective, a non-medical professional perspective, a
legal perspective, a parental perspective, and a host any other
perspectives.

I myself do not know where I stand with genetic alterations. Having a
genetic condition (be it eye color, hair color, physical ability,
intelligence quotient) myself with a known chance of passing it to my blood
kids know that I want children, maybe some blood some adopted, maybe all
adopted, maybe all bloodline children.
I still can make my choice, and take my chances. As long as I have the
choice, I will make my choice based on the best information available to me.
Thanks for the thought provoker, these are my own thoughts and not
necessarily the thoughts, beliefs, opinions, or practices of the agency who
employs me.”

Geoffry Kettling (Victoria, Texas USA, NFB-talk)

FROM ME: “What do you think, will science eliminate visual impairment, blindness someday?”

**9. “I must say, an interesting piece. Let me begin by introducing myself. I am
a Vocational Rehabilitation Counselor in the Dallas area. My caseload
averages about 85 consumers at any given time. Last year I assisted 45
individuals who were either blind or visually impaired make some very
important life decisions. Though my work focuses primarily on employment
and independent living skills, the foundation of any career or life decision
revolves around the level of adjustment that has been achieved by the
individual.
Regardless of the nature of the blindness, or the date of onset, issues
relating to personal and social adjustment ring out as the most salient
issues. congenitally blind persons usually require training related to
social morays, grooming, appropriate eye contact (real or modeled) and
expectations of employers and co-workers. Those who become blind after
adulthood usually require a substantial amount of information relating to
access and ability. Once the adventitiously blind person realizes that
resources exist accomplish daily tasks such as reading, accessing mail and
print materials, accessing transportation, etc, they are usually much more
able to discuss career and other life decisions.

While I have had little experience in discussing the "family planning"
process, I feel that many of the principles are the same. A more
provocative question may be, "How well equipped are blind parents to raise
children in a sighted world?"

Blind parents must be aware of very subtle societal norms. Pretending to
look at your 5-year-old and clapping when she turns her first summersault is
important. Being careful not to parentify the child is paramount. too often
I see blind parents rely on their pre-adolescent children to sort through
mail, or pick up the papers that have fallen from the desk, or do any number
of tasks that would normally be done by the parent, if he/she had sight.
Parenthood is for grown-ups, not the children.

It is my belief that the children of blind and/or visually impaired parents
can live full and wonderful lives. Regardless of whether or not the child
has sight. If the child is blind, seek help from a local Commission for the
Blind. Developmental toys exist that facilitate normal development and
growth. If the child is sighted, learn how the sighted world interacts.
Granted, children do not come with instructions, but many resources exist to
coach parents along during the process.

I assure you, I will give this issue more thought, but for now, suffice it
to say that parenting a child is a big responsibility for sighted and blind
parents alike. No magic secret exists that will make your child turn out
successful. Raising a child is a process, not an event. Be prepared to
answer the tough questions and to share your own experiences with your
child. Also, be aware of the vast resources that exist through local and
national organizations. You do not have to re-invent the wheel...Many have
been blind, and many have had children. Ask for help.”

David Ondich, M.S., CRC
Vocational Rehabilitation Counselor
DavidO@tcb.state.tx.us, NFB-talk)

FROM ME: “Not having to reinvent the wheel! Comforting? What does this statement entail?”

**10. “I think that the family should be happy that the child is relatively
healthy. AFter all, I think that blindness can be gotten down to nothing
but a physical inconvenience. I guess I've had many sighted people tell me
both at school and other places how they enjoy my independence, and that I
get more and more independent all the time. The encouragement is always
good, and I just sort of feel touched when these instances occur. For
instance, I just had a visit with a sighted adult friend last week whom I
haven't seen in a while. She was impressed by my continuing reach to become
more and more independent.”

Stacy (Wisconsin, USA
musicmaker@MailandNews.com(

FROM ME: “As for blindness being brought down to an inconvenience, as they say, ‘From the mouth of a babe…’ Here is an up-beat youngster speaking to that very fact. We may want to ask her, where all does that come from?”

**11. Warning: I have very strong opinions about this. I firmly and staunchly
believe that a parent who has a child and knowingly has a high chance of
passing on inherited blindness, as well as a host of other inherited
horrors, is being selfish, irresponsible, and cruel. I would never
knowingly pass on blindness nor anything else on to a child. No matter how
I've run my life, blindness has not been nor it is presently fun nor easy
to cope with, and I feel it is crazy to pass it on to another human being.

There are a lot of rationalizations - "Well, I am blind, and I made it
okay" being the most common. There are many babies out there desperately
needing adoptive parents, and while it is often difficult for a blind
person to adopt a child, I think it is a far more responsible thing to do
than passing on a known problem to someone else. I know that my position
will not be popular, but I don't really care.”

Carol Ashland (Eugene, Oregon, USA
carol_a@efn.org)

FROM ME: “The passing on of a known problem. ‘Problem’ is the key word here, look to see what some will describe as its nature, its size, its…”

**12. “I would not knowingly pass on a genetic condition that would lessen my child's life. Life is to beautiful to have to address it with a handicap that could be avoided. This does not mean I believe in abortion. Just don’t conceive if you know!!!”

Mary (Iowa, USA)

**13. “What I say may be hurtful to some. Those who do not agree with me must
realize that this is *my opinion* and not intended solely to hurt or anger
anyone. My views are based on 47 years of life, dealing with disabled
children and adults and hearing their stories as well as understanding my
own. Did the couple above make the right choice? No. If persons do not
wish to read more, please go to the next message NOW. I do not plan to
mince words.

To all who have stayed, I will now explain myself. The objective of
parenting is to make the best possible choices, give the best possible
chances to your offspring. "Best possible" does NOT, and never WILL
include passing on a disease or disability! Even if a child is not
affected, that child WILL be a carrier of the defective genes. The only
thing the parents have succeeded in doing then is to pass the bad decision
on down the line. I speak from experience. My mother was an incurable
alcoholic. She had bad genetics and she had many pregnancies. She had many
stillbirths, miscarriages, a few abortions and seven actual infants, three
of whom died very young and the remaining four ALL damaged permanently. My
half sister has neurological problems, a deformed foot and learning
disabilities. I have poor vision, neurological deficits, learning
disabilities and other problems. My sister and brother are both visually
impaired, my brother had learning deficits and attention deficit disorder
and my sister may very well be either blind or retarded. Overlaying all
these disorders is Fetal Alcohol Syndrome which we all have.
None of us have had children of our own. In our family history, we have
heart disease in all generations, Parkinson's Disease, alcoholism and
addictive disorders, diabetes and a number of other defects. Frankly, none
of us should have lived and had it not been for incubators and medical
intervention none of us WOULD have lived. Unfortunately, with the state of
medical intervention possible, babies who should NOT live, such as the
McCaughey Sextuplets, and the babies born to crack-addicted mothers, are
living to pass the damage on. They will become a burden on the taxpayers,
on society as a whole, and will continue the vicious cycle. The parent who
KNOWINGLY has a child when it is KNOWN that there is a chance of passing a
genetic abnormality on, is guilty of gross incompetence, selfishness,
parental malpractice and just plain stupid self-serving bad judgement. A
co-worker I once had, whose parents were both diabetics, sued them for
allowing her to be born. She was afflicted with juvenile onset diabetes,
which had been a one hundred percent certainty, and she suffered from every
complication, including neuropathies, joint problems, vision and liver
malfunctions, she had had open-heart surgery as an infant and she was in
perpetual poor health. She was not grateful for her life, she was furious
at the ones who had caused her to be born in such a condition. I, too wish
my own mother had not made the decisions she had. I cannot have children
and I don't want to. The best thing I can do for society is to shout
warnings from my personal experience. NO parent who KNOWINGLY brings a
damaged baby into the world has made a wise decision. They have been
egotistical, selfish, wantonly cruel and negligent. Again, this is my
opinion. Anyone disagreeing with me may certainly offer counter arguments,
and I will listen, but I base my stance on my life and the lives of my
friends and relatives directly affected by such decisions.”

Sylvia Stevens (California USA)

FROM ME: “The damaging of an unborn with drugs and other agents is another issue in and of itself, right? How about it, a disabled person bringing legal action against their parents for bringing them into this world?”

**14. “Though I feel life can be lived successfully and with great satisfaction
as a blind person the realities in this world are such that I would not
willingly bring a child into this world with the likelihood of being blind.
I think one cannot avoid the possibilities when they are unknown but when
they are known and they are reasonably high chances that a child would be
born blind I think not opting for such a thing is the appropriate response.

After all, I basically believe it is selfishness on the part of the
parents to want a child to meet their personal needs--after all, the child
has no such needs prior to its birth--but a willingness to meet your needs
at the potential lifetime's experience of a blind child is pretty
self-centered. There are many children already in this world who need
loving parents and they could be adopted if the need for parenting is that
great. I myself have done precisely that though I did so not because of
the possibility of passing on blindness but rather because as a single
person I still wanted to be a parent and so I have done so. It is more
complicated and often much more difficult as a blind person to adopt but
the rewards are not diminished by the effort required but enhanced. I
personally know several families where several generations were all blind
because the parents involved ignored the likelihood of passing on
blindness. The result for most of the children has been terrible because
of the marginalized lifestyle so many blind persons are forced to live.”

Lisa Carmelle (Raleigh, North Carolina USA)

FROM ME: “adoption is an option.”

**15. Boy does your stuff provoke thought!
I remember it seemed forever and ever before the
doctor said, You have a fine son, Mrs. Gold." In
actuality about five minutes went by, while Jason
demonstrated his quite respectable lungpower. Why
in God's name can't the doctors say something like,
"everything seems okay," or some such thing. The
things that went through my mind in those five
minutes! Is he healthy? Is he normal? Was he
damaged?
What's wrong? Why doesn't the doctor say something?
But I'm sure that's not what you wanted to know,
which is: could I accept it if I knew my child would
be blind?
I don't say I wouldn't grieve - I surely would - for
all the great paintings, all the smiling faces, all
the stars in the night sky, all the sunsets my child
would never see.
But could I accept it? You bet I could. And I would
pray that I could give my child the ability to
compensate for his lack of sight with insight and
vision, and the strength to deal with the
consequences of being different.”

Carolyn (Clearwater, Florida, USA
rgold2@tampabay.rr.com)

**16. “I have thought to myself many times before and I have discussed this topic
with my friends and family. I don't feel like it is my place to tell anyone
if they should, or shouldn't have any children. I too have a eye condition
that is hereditary and I would not want someone telling me if I should, or
shouldn't have children.
This is a matter that me and my wife would have to discuss. I understand
that it isn't easy to live as a person with a visual Disability, but it
isn't the end of the world.
I think that this child would have a good role model, or models.
Thank You,”

Kevin L. Maynus Systems Advocacy Specialist (Beckley, West Virginia USA
Home Phone #(304)253-8821
Work Phone # (304)255-0122
Emailmaynusk@mtneer.net)

**17. “This is an excellent case scenario. First of all
couples make a choice in having children. so called" normal " folks with
total sight often have babies with a disability at birth. Only one higher
power can tell you exactly what your baby will be born with. this couple
obviously did their homework, but then in the excitement all questions to
the doctor are surfacing. some diagnosis can be made right away but
others may not be detected until a child is at least a few months old and
others, cannot be accurately measured until the child in question is a few
years old. as time passes by more and more progress is being made in the
field of optometry and if a family is fortunately given birth in a
community where the best is available, then many mysteries of blindness can
be avoided. I have a little problem with the question if " my son be
socially” damaged? all of us as we grow are sometimes given the opportunity
to flourish with our abilities and thus the need for continual education of
all disabilities in all schools with all educational staff. It is the
adults of this world who have a problem with the stigma of a disability to
include blindness. Once we educate the children who will become adults, the
question of who is or is not socially acceptable, will die off. for years
there has always been questions asked in hospitals as seen here" is she/he
okay, will she /he be normal?" Who decides who or what is normal." Those
kind of Kids or people" is you and I. We as all humans need to think and act
positive. Once we have passed that point in life we can ask the other questions such " is he cute? does she have lots of hair?"

I have possibly spoke to long here but I cannot stress enough how important
education is for the world around us. We as persons who are blind can and
do need to understand we have a purpose and one of them is to positively
help educate folks , including doctors , that blindness is a concern but
not the end of the world.”

Lee A. Stone (Hudson, New York U.S.A.
stonedge@mhonline.net(

FROM ME: “What all do the doctors need to know? What is the best way to teach them?”

**18. “I too agonized over the decision to have children. My first wife and the
mother of my two teen-age boys also wondered what to do about giving life to
children who may eventually have the same destiny as I.
You see, I am one of 15 children, and my parents are both from families of
14. I am from a fine French Canadian Catholic family, and only one other
has vision difficulties other than the usual need to wear glasses. My
eldest brother has suffered from detached retinas, but they have been
repaired in time to retain his vision. My blindness on the other hand came
as a result of some sort of unexplained blood vessel disease. I went from
20/20 vision at age twenty, to slow visual decline over the next 13 years
leading to eventual total blindness at age 34. No one else in my family,
nor in my parent's families have had the same condition, or any other
remotely similar condition.

I guess my decision making around this issue was relatively simple, but one
that took a considerable amount of time to reach none-the-less. I didn't
use the services of a Genetic Counselor, but discussed it with my Eye
Specialist, wife and family. The doctor asked whether or not anyone else in
my extended family had similar conditions, to which I found none. My wife
only said that I must be the best that I could be, that way my children
would learn from a positive role model should anything cause them to be, or
become differently abled, and my family all agreed that if there was no
previous evidence of blindness in the family, I should have nothing to worry
about. So far I have been the best person I can be, and my boys have grown
up to be responsible young men. After all, they are only 16 and 13 and
their destiny is not yet fully determined, so time will tell whether or not
They will adjust well should blindness befall them.

At this stage in my life, I don't really know what I would have done should
I have had a Hereditary condition however. I feel that I may have chosen to
not have children. I know today that life is fine no matter what conditions
you are dealt, but if I had a preference, I would live life with sight
rather than without. I encourage constantly those who work in industry that
they have to wear Eye Protection for their own sake, and for the sake of
their families. So, given that I too value vision, would I knowingly give
my children a life without sight? It's a difficult decision to make, and
one I suffered under for several years before having children. A hereditary
condition may have had me making a different decision though.

There are two hats that I wear in my daily work. One is to counsel newly
blinded individuals about the possibilities that exist after blindness, and
the other one is to encourage workers to wear Eye Protection so that they
may save their vision. To one group I say that sight is one of the most
important senses, and to the other group I say that sight isn't as necessary
for daily living as it's cracked up to be. How does one reconcile these
different views?”

Albert Ruel (From An Island In The Pacific
Victoria, British Columbia, Canada)

**19. “After much soul searching and discussion, two loving parents have brought a child into this world. Will he be loved? Most
certainly! As their hands meet around this tiny bundle you can feel the strength forming a bond that says "family." Whether
the child has a visual problem or not, they will cope and prevail. After all, he is perfect in every way and any challenges
that they have will be met head on with the strength of each other. What a lovely way to contemplate the coming of a new
year.

I know an elderly blind woman who got conjunctivitis in the 40's and went blind because of it. She went to Fremont School
for the blind and met her husband there. (He was blind also.) They had three children and raised a healthy loving family.

I never even thought to ask her if any of her children were blind, it didn't seem to matter. Her spirit and loving nature
were what impressed me. I always think of her husband counting his footsteps to his home after he got off the bus after
work. And his anticipation of walking in to his large busy family. They have always been an example of two people who created
much happiness and stuck together through good times and bad, in my mind. Now I want to ask them about how they survived
those teenage years with three kids, it was hard enough for me with just one!”

Suzanne Lange (Chico, California USA)

**20. “No matter what, they made the right choice. If someone had decided not to have any of us who are blind, Where would we be.
Who has the right to say whether an unborn child lives or dies? Just a thought.”

Lee Kerr (NFB-talk)

**21. “One comment. The story wonders if the baby will be blind or "normal."
Blindness is a normal part of life.”

Fred Wurtzel (Michigan, USA)

**22. “I think the parents in the story need not be worried whether their son will be visually impaired or not. I know it will be scary at first. For sure as they go through their live’s, they will come to realize that, “Hey, my kid is normal, just that he can’t see.” They can get support, help from blind people and such organizations like the National Federation of the Blind and other organizations of that nature.”

Chris Judd (USA)

FROM ME: “Chris mentions the NFB. Not only do they have the concept of local chapters of adults, but also a national parents division, with many states having local chapters as well. Who better to talk to than experienced parents?”

**23. “I have x-linked RP. I am blind (legally) and have been for years. While
I still have some residual vision my identity is and has been that of a
blind person. I think that terms like "visually impaired" are often
riddled with denial which is a worse problem than blindness itself. I
also think that the "medical model" is a trap. I cannot or will not let
my life drift by awaiting a cure.
Finally I detest words like "normal" when associated with RP, blindness,
or any disability for that matter. I am "normal". I'm just not
"average".

Blindness in and of itself is no tragedy. Discrimination, stereotyping,
prejudice, lack of training and rehabilitation, etc. are tragedies which
I fight every day of my existence.
The fact that I have a daughter who is a carrier of this disease but
will not manifest it herself is most germane here. Her mother, family
and others view blindness as a horrible disaster which automatically
makes a person either an object of pity or of prejudice. My consistent
message to my daughter is that the ultimate goal of life is to live
somewhere in between those two things.

My very daughter whom I raised (not my sighted ex-wife) must learn to
"see" past the stereotypes and prejudices against blindness that are
still abundant in this society so that she might make her own child
rearing and family decisions based only upon whether or not she wishes
to be a mother; Not whether or night she might give birth to a male
child who will have RP.

The greatest gift that I can give my daughter is to be a fundamentally
decent, productive human being who also happens to be blind.
I give her independence, tenacity, principle, a sense of justice and a
whole host of virtues. I also am a human being who can try at often fail
at aspects of life including dealing with blindness. But the ultimate
gift I give my daughter in this regard is that I show her even though I
can stumble and fall I also can continue to get back up.
I will have more on this topic to contribute at another point. It is
complex to be sure. But again to view myself as some sort of "child of a
lessor god" because I happened to be born with RP would send the wrong
message to myself, my daughter and to society at large.
All love begins with self love. All respect begins with self respect. No
problem is addressed with denial but neither is it addressed by
"wallowing" in fear, loathing or self pity.
Sincerely,”

Paul Joseph Harcz, Jr.
(Advocate, Journalist, Blind Man, Loving Father, harcz@office.mv.com>)

FROM ME: “Just how important is ‘identity’ by a blind parent to the raising of a child?

**24. It sounds like most of these blind couples do not knowingly pass blindness
on to offspring. They only know that there is a risk, however high or low,
of having a blind child. A blind child is still a human being, and I would
think that no one would be able to understand this better than a blind
parent. Parents grieve about their children being unable to see a sunset, a
person's face, etc. but they do not realize that a congenitally blind child
could care less about these sights, having never seen them before. (I am
not speaking for the entire blind population; I do not mean to make
generalizations). My personal eye condition is hereditary, but it is an
autosomal-recessive disorder, so my child could not develop it unless I
married someone who carried the gene. But it is impossible to know who is a
carrier, and my children could still pass the gene on as carriers. I am
only fifteen years old and much too young to be contemplating having
children. But I strongly disagree with all who say that it is selfish or
cruel to bring a blind person into the world. I may have been lucky, having
learned Braille at a young age and having contact with many blind children,
but I still face the same prejudices, frustrations, and disappointments of
every blind person, and I am glad to be alive, and I do not regret that I
have this unique challenge to face. I might have had an easier time in life
if I could see, but knowing that the past cannot be changed, I am happy
with my circumstance. If I did have a blind child, I would know what works
and what doesn't in the process of teaching blindness-specific skills and
skills in general, and I would know this much better than most sighted
people. Life is precious, and for every painful incident that a blind
child faces there should be at least one positive moment in his life. In my
honest opinion, blindness should not interfere with a couple's personal
decision to reproduce.”

Arielle Silverman (Scottsdale, California USA)

FROM ME: “Is this issue in a large part a matter of perception? What is seen to be a major problem by one is not seen that way by the next person? Then if so, why?”

**25. “This was very interesting.
I had several thoughts and reactions upon reading this update.
one thought that came to mind was every person, blind, sighted, disabled,
"normal" whatever, is "different". with differing personalities and views.
the question of whether one should knowingly have a child that is blind
will vary, and each person has a different way of looking at it. someone
who is generally upbeat and positive is more likely to say "yes" having a
child that is blind is fine, i can deal with it. someone who is more
serious, negative, or has encountered more difficulties in life, is more
likely to say "no" having a child that is blind is a selfish act, and not
a good idea.

I was also interested in seeing the percentage of folks that were
basically for versus against having children knowing that they might very
well be blind. I’d say the vote is in favor, from my estimation.

one can only suppose and ponder what they, themselves would do in a
similar situation. I am blind, I knew my eye condition was NOT hereditary,
and I choose to have children. I can only guess what I would have chosen
if I had known my eye condition was hereditary. in hindsight I think I
would have gone ahead and had children. children are wonder, beautiful
beings. full and delight and wonder. being blind doesn't change that fact.

one other issue to discuss. some folks responded to "blindness" as if it
included a host of other conditions. I believe we are writing on the
Premise that the child would be "blind" not multibley impaired. that might
be a totally different thought Provoker. blindness, with little or no
other damaging conditions is not a huge disability. but then again,
attitude and personality play a huge part in this factor.

I’ve rattled on enough. let's hear from more neigh-sayers on this topic.

my two children have no sight problems, if that wasn't made clear in my writing.)

Merrilee Hill-Kennedy (Michigan USA)

FROM ME: “In general, does negativity breed negativity and Positivity breed positivity?”

**26. “I think you have opened a can of worms. If the mother
has second thoughts of taking care of a blind baby,
what would she do if he was retarded? Would that
changed the way she would care for it? I think rather
their is a history or not their is no guarantee what
condition or problems the baby will have.

Having MARFANS I have asked myself the same question,
I think if we had no money problems and she wanted to
go thought the process of given birth etc, then I
would go for it. I would have given something to this
world to carry on my name and genes. Having a physical
limitation just makes the person work harder mentally
to be competitive in the market.
Then if you just want to have a child you could always
adopt. Maybe you should give Dr Laura a call 1 800 Dr Laura)”

Joe (AERnet)

FROM ME: “I’m setting here thinking if the word and concept of ‘practicality’ is being spoken here? If so, how does it way in?”

**27. “Nice responses, Robert!”

Lorraine Rovig (Baltimore, Maryland USA)

FROM ME: “Thanks and may we all say it right back to you."

**28. “My wife and I are blind. I am totally blind and my wife is partially blind,
About 20/400. We have four children. Our first three have no vision
problems, but our forth has the same condition that my wife has, which is
some sort of retinal dysplasia. his visual acuity will be about the same as
my wife's. He's almost two years old.
We have been told that our eye conditions were not hereditary, and with our
first three, we believed that.
If our first child had an eye problem, we'd still have four children. Our
blind child will know no limitations because of his blindness. We are, by
example of our lives, the best teachers for our children, sighted and blind.
Would I rather be able to see? You better believe it, I would. Since we
cannot choose every aspect of our life, I am moving forward blind or not.

If blindness is your only health problem, you are extremely lucky. We love
our children. they know that they are loved by us. What more could you
want in a family?

will it be hard for our blind child? certain things will, yes; but being
treated like a child or an incompetent by sighted adults will not happen.
Most of our friends are blind, or have family who is blind, and our children
will not be exposed to the childish treatment of the blind while living in
our home. How many of us blind adults today can say we had that living in
our sighted parent's home with sighted relatives?”

Tom rash (Yucaipa, Ca
avtom@gte.net)

FROM ME: “Environment’ is the concept I’m thinking of now; wherein the child is socialized. Read back through the above response and see how this writer includes it in what he says.”

**29. “i have an eye condition which is genetic in nature. it is called Retinitis pigmantosa. I also have a son of 4 years. of
course, I was and still am concerned of the possibility of his developing RP. and of course I don’t wish him to have any
disabilities.

I do have to say that I would have had him regardless of his physical developments. you see, if I was to make the decision
that his life wasn't worth living because of a disability, I would have to say that my life isn’t worth living as well.
in fact, if I wanted 10 children, and I somehow knew that that would have RP, I would still have them.
I believe that I contribute to society, and I give back at least as much as I take, and most importantly, I love life; and
to think that some people avoided having children because of the possibility of them developing RP saddens me. I can only
speak of blindness, but the presents of eyesight has nothing to do with happiness.
Sincerely,”

O. Glenn Ervin O.C.
Services for the Visually Impaired of Nebraska (Norfolk, Nebraska USA
gervin@ncfcomm.com
or
gervin@kdsi.net
Voice: 402 370 3438
fax: 402 370 3508”

FROM ME: “Sometimes I will say, ‘Life is too beautiful to get hung up in the small things.’ I think this guy is saying this.”

**30. “Reality can rain on your baby parade, but this baby boy seems pretty
"normal" to me. We all know that having a disability like blindness does
not prevent anyone from living a perfectly normal happy successful life.

Parenting is an awesome responsibility. Parents can only do their best to
provide a healthy environment. The rest is random chance. Welcome to
reality.

Looking at Census figures taken a decade ago, about 24.6% of the US
population has a disability of one kind or another. Whether it be
diabetes, cerebral palsy, ataxia, blindness, cancer, heart disease, or
whichever you prefer -- it is not just normal to be disabled. With nearly
One-Quarter of the population, it is downright typical to be disabled.

Get over it. If the son develops blindness at a young age, as I did, or at
an advanced one, as my grandmother, it is no big deal. Few of us are ever
promised an easy life. It is better to accept the facts, be responsible,
and do the best we can.

Opportunities are vast and varied. So many different great groups exist to
assist people in living a normal life that it is hard to see why we have so
many hang-ups about disability. I am so grateful for the National
Federation of the Blind, and others who fought for our civil rights. We
still face barriers, but they are getting smaller every day.

Participation in a peer group like an NFB chapter is important. Humans
evolved as group animals. We need feedback and face to face experiences to
prepare us for life's little problems. If Steven Kelso's parents had been
members of a parental support group, they wouldn't have abandoned him at
that Delaware hospital. I believe that their shameful problem now is the
result of their inability to fully accept the reality of their son's
disability. Had they done so, they would have known other local parents
with similar children who would have advised them appropriately. If they
needed a break, I'm sure fellow parents in their peer group would be happy
to care for Steven while they had a night on the town.

Reality is raining on the Kelso's baby parade. This Thought Provoker baby
is normal, and so are we! I would jump at the chance to raise a blind
child. The men and women I know from my membership in the NFB are superb
role models for anyone. These hypothetical Thought Provoker parents will
be wonderful, with friends like us! We are at the dawn of a new age.
Let's make it our own. The babies will be all they can be.
Best wishes for year 0,”

Fred Chambers (Carlsbad, California USA
regenerative@earthlink.net)

FROM ME: “reality therapy and support; that’s how I’m thinking and feeling right now.

One other thing, though I am a member of the National Federation of the Blind, this forum is a neutral zone. You’ll talk with your biases and I have mine. Do you think this is fair, I do.”

**31. “I am surprised that a few people who responded to this thought
provoker said that they would not knowingly bring a blind child into
this world. I think there are worse things than being blind.
it scares me to think that if my parents knew ahead of time that I
would have a visual impairment, I might not be here today. Although
I don't know this for sure, I can't help wondering.

Although like many visually impaired people, I have had to face
challenges that I would not normally have faced as a sighted person,
and I have occasionally wished I had normal vision, I am grateful for
the sight I do have and I'm happy with my life. I have known other
blind and visually impaired people who have ben successful in life.
So, I have come to the conclusion that if blind and visually impaired
people put their minds to it, they can lead full, productive lives.”

Abbie Johnson (Sheridan, Wyoming U.S.A.
abbie@wavecom.lnet)

FROM ME: “Let us take one sentence from this response and look at it- ‘it scares me to think that if my parents knew ahead of time that I would have a visual impairment, I might not be here today.’ I’m trying to come up with a word, a concept out of the dictionary that fits this? And, I’m thinking there are several levels or angles which can be represented here.”

**32. “First of all it is I would say a "normal" feeling for someone to think right
away of there child having a disability, especially if there is a chance for
it to be passed on. For a person to feel like this is no reflection of how
the person feels about their significant or intimate other who is blind.
What has to be taken into consideration is how difficult it has been
for the person who is blind. There are a whole lot of variables that have
to be taken into account because if in fact the person has had a difficult
time in adjusting to them being blind and how hard it has been to access
services for the blind or for that matter trying to find employment then the
thought becomes all the more prevalent, but if he as the man is the one who
is blind in this story has steady employment and has achieved many things
then the thought is still going to be there although it may not be as strong
of a thought.

I know as for myself going from one time being sighted to now being
total there are some things I would not like for my children to go through.
Reason being I know things are and can get pretty rough. My girlfriend and
I are both total and we do our own thing when we want to, but just like a
whole lot of other blind people we come up against those issues we all
share, such as transportation and being excluded from certain things.

I do know that being blind is not the worst thing in the world because
there are so many blind people doing so many different things. I also know
with the right type of support we can accomplish so many other things. Now
a days we are everywhere and there is no way of getting around us that's a
fact. The thing about children can be very cruel in the way they interact
with each other and I do know it really doesn't matter if you have a
disability or not children are going to be children.

There is a difference though when a person is born blind to that of a
person losing their sight later in life because the adjustment is and can be
somewhat more difficult considering what resources are in place to assist.
I know we all have faced difficult times in certain ways and really there is
no getting around that and I do think the more experiences a person has the
more knowledgeable they become. So What I'm trying to say here is that my
girlfriend and I have discussed having kids and yes we are going to make
that attempt once we get on our feet financially because I know we can raise
kids and there is no stopping us only ourselves.

The last of my thoughts is what is also going to add to our success is
belonging to the N. F. B. which I think we all should belong to some sort of
blind organization that advocates for our rights. Without such
organizations we as blind people would have it a lot harder than what we
currently do.
Peace”

Luis Roman (3509 Grand Blvd.
East Chicago, Indiana 46312 USA)

FROM ME: “This is not the first time we see someone mentioning that being the member of a group is important for them. I’m looking to see what they say is personally gained and what must that group offer in order for those personal characteristics to be evident; what do you think those personal and group characteristics are?”

**33. FROM ME: “Here is a response to an earlier response found in the first update. This gentleman felt inclined to make two specific points of questioning and/or elaboration. As stated in the rules of THOUGHT PROVOKER, this is encouraged, but to have the comments inserted back into the forum, it must addresse the content and not take issue with the original writer personally. That includes me; you to me and me to you.”

“I hope that you don't mind my responding directly to you regarding one of your
statements. I'm assuming that you don't, since you included your e-mail
address. Since this is somewhat off-topic, I didn't want to assume that Robert
would want to include my remarks within his next collection of responses. I've
copied him, though, for his interest, and so that he has the opportunity to
include them should he feel so inclined.

I am a blind father of thirteen children, so, while I'm no expert, I do have a
bit of direct personal experience to draw upon. I whole-heartedly agree with
almost all of what you wrote, and especially with your summary statement:
>A more
>provocative question may be, "How well equipped are blind parents to raise
>children in a sighted world?"

I find that a lot of blind people suffer from what I would summarize as
misdirected pride. They are so concerned with showing off their independence
that they fail to admit, or, perhaps, even to acknowledge, that there are
situations which they are wholly inadequate to handle on their own. Here are a
couple of really practical examples:

First: I am unable to passively assess the seriousness of a physical injury to
one of my children. Other than talking with them (which doesn't work very well
when they're very young), I'd have to touch, if not probe around, the injured
area. This would cause an excessive amount of additional pain, and would also
increase the risk of infection. I am very grateful, in situations like these,
that my wife can see, and that I have older children who are well-equipped to
give me a solid and reliable opinion.

Second: It has happened, more than once, that one of my younger children has
quietly sought out a comfortable resting place, and then, without telling me
where he was, went to sleep. It is often near impossible for me to find him
because he is breathing ever so quietly. If I have no sighted help, then I
usually just let it be, as he'd make some sort of noise should some health
problem arise. The problem, however, is that I'd be unable to rescue him should
a serious emergency, e.g. the house catching fire, take place.

The one area where I sharply disagree with you revolves around your statement:
>Blind parents must be aware of very subtle societal norms. Pretending to
>look at your 5-year-old and clapping when she turns her first summersault is
>important.
I would never do this sort of pretending with my children. My practice is to
slowly and naturally, but very early on, make them aware that I can see neither
they themselves nor what they are doing. They have absolutely no problem with
this, and learn to tell me what they want me to know. If I had a child who
wanted to demonstrate to me his first summersault, to use your example, then
it'd go something like this:
He'd start out by coming to me and telling me what he was about to do. He'd
then talk to me from the start point, do it, and talk to me from the end point.
He might even talk to me while he was upside down. He would, in other words,
give me audible clues at every point along the way that he thought was
important for me to be aware of. I would then complement/encourage/caution him,
as needed, in the same way that any other parent would.
It's not important to him that I see what he's doing. The important thing,
rather, is that he knows that I know what he's doing. The even more important
thing is that my relationship with my children is such that every one of them
knows that I'll always be absolutely honest with them at all times. I believe
that this sort of total openness between a parent and his child is crucial, and
refuse to ever do anything that might damage it, even if it only amounts to
what others might refer to as a "white lie."

Dave Mielke (856 Grenon Avenue, Ottawa, Ontario, Canada
Phone: 1-613-726-0014, Email:
Canada K2B 6G3)

FROM ME: “We will have a future Provoker that questions, ‘Is anyone totally independent? Are we not in many situations, we the blind and we the sighted, are at times inter-dependent?’ Sometimes personal abilities or alternatives and/or attitude are not enough and we need assistance from another, right?”

**34. “There are people who feel that it is wrong to bring children into this
world due to wars, hatred, poverty, population control, etc. There are
good and bad reasons for having children. It is not a selfish act to bring
another person into this world. I do not see how that is selfish. Believe
me, I have had to do a lot of sacrificing for the ones we brought into the
world! How is that selfish!!!!! What if you bring a healthy "normal"
child into the world, where is the guarentee that he or she will stay that
way? If your child gets hit by a car and has a broken leg or some
impairment that is either temporary or permanent, do you throw the child
out because he is no longer perfect"? Do you know any perfect people? I
don't! Is the value of life dependant on what one has physically? In some
cases it is, when the doctors and some people kill an unborn child because
it will have a handicap. But that is not humane or even reasonable. No
one has the right to determine whether my life has value to me, but me.
There are some people who were given good eyesight, good hearing, a healthy
body, and they are miserable because they do not know how to live a
productive life. Do they have more of a right to live than someone else?
NO! I wish that all people were healthy mentally and physically. But,
being a productive, kind, loving person who does things for themselves and
for the good of all mankind are the greatest people whether they can see or
not. I have compassion for the one who was born with so many disabilities
due to the mother's alcoholism, but, to deny life to others because of
one's own personal disappointment, is not freedom. Everyone must make the
decision to have children based on what they feel is the right thing to do.
It is no one else’s business. How many they have is no ones business
either. But, once again, how can one say that having children is selfish?
IT is the most selfless thing I have ever done. The world is a better place
due to people like, Fanny Crosby, Helen Keller, Ray Charles, Ronnie Milsap,
Pat Conrad, Robert Newman and others who contribute to society. Let's hope
there are more like them born.”

Rory Conrad Dunlap, Iowa USA)

**35. “My mother had the discussion about having kids when I was in my late
teens. I had decided I would have a large family when I married no matter
the risks of passing on disability. I had little enough faith in doctors I
didn't really believe they could accurately determine if I would have
disabled kids. They'd done such a bang up job after all of misdiagnosing
me every step of the way. I'd seen families where all the kids were blind
and I didn't see anything wrong with it. She said such an attitude was
selfish and unfair to a child but my view was that I'd be best equipped to
handle raising a blind child, after all, I'd been through all the
nonsense that the sighted world had to offer and could help the child do
a better job than me in coping and finding a way around it. I can however
understand a child not being grateful for being brought into the world
disabled. My vision took a nosedive when I was 110 and I went from
partial sight to being almost totally blind except for light perception in
one eye. I went through a couple of years of what thee experts called
acting out during which I greeted every bump in the oad from having to
read Braille to being left off invitation lists for parties given by
sighted friends with the declaration that my mother should have had an
abortion the minute she found out she had been exposed to German Measles
while pregnant because there was a chance I might be disabled instead of
ruining my life. That had to have been very hurtful to her at the
time. But we did work through it and I have a real good relationship
with her. I think now if I decide not to have childen it will be because I
am reluctant to give up my freedom and am too set in my ways, things that
don't work well with parenting than because I'm afraid to pass on my
handful of disabilities to a child. Some blind and some sighted people
just aren't parenting material.”

Sue Ellen (USA)

FROM ME: “So what about that statement, ‘Some blind and some sighted people
just aren't parenting material.’ I sure think this is true, how about you?”

**36. FROM ME: “Before you read the next response, remember this forum is neutral ground and does not push any one philosophical set.
other than communication is key.”

FROM ME: “This author is referring to a response in the first update, giving the name to key us back to the one in question.”

“Debra Streeter on January 2, 2000, at 09:40]
“I wish that blindness was all my Ginny has for I would have her
>now....a
>bouncy and alive nine year old.”

{Text of message starts} “I come close to understanding how you feel, being as my wife and I have
experienced a miscarriage. I realize that it's not quite the same thing,
because we didn't have to live with the advance declaration of our baby's death
for an indeterminate amount of time.
We have also, by the way, had another child who was essentially dead upon
delivery. A routine medical checkup at 8 months revealed that blood flow
through the placenta had stopped due to an unexplained severe pressure
build-up. He was eelivered by emergency caesarian section with neither heart
beat nor breathing. It took a highly specialized team of doctors 7 minutes to
get his heart going, some more time to get him breathing, and then another 18
hours or so of non-stop work before they had somewhat stabilized him. At that
point his life was still very tentative, being as he was still suffering from
massive internal and external bleeding, a very swollen brain, body electrolyte
levels being totally out of balance, etc. Those weeks were ones I'd rather not
live through again, and they, too, bring me close to understanding how you must
feel.

>”somehow that possibility did not seem as devastating to us (myself and
>my sighted husband) as the gut-wrenching declaration, "Your baby will
>die and there is no hope for her to ever survive, much less be anymore
>than be independent of a hospital's care".

But there is hope. The Bible teaches that we are eternal beings, and that it's
where we will be on the other side of the grave that really counts.

>”whereas there are some medical diagnoses that give
>you no options and in my daughter's case, no hope for a long life to
>make the world shine."

You have used a wonderful analogy. The Bible declares, in Daniel 12:3, that a
true believer in God, i.e. one whose sins have been paid for by our Lord and
Saviour, Jesus Christ, will shine as brightly as the stars for the rest of all
eternity. It says, "And they that be wise shall shine as the brightness of the
firmament; and they that turn many to righteousness as the stars for ever and
ever."

Please teach your children of Jesus, and of what He did to bring salvation to
mankind, so that you can know, with absolute certainty, that promises like
these apply to them too.
May God grant you all comfort, peace, and salvation, as well as a deep and
ever-abiding knowledge of Himself.”

Dave Mielke (856 Grenon Avenue Ottawa, Ontario)
Phone: 1-613-726-0014)

**37. “This is a hard thing to talk about for me, but, I'm going to give it a go...

I am legally blind due to R.L.F. I have no sight in my right eye and very
poor sight in my left, no periffial vision and spotty central vision and no
depth perception, and just to keep it interesting, dancing spots that looks
like T.V. snow covering over all I see.

When I was born 3 months early in January of 1977 the doctors gave my parents
the facts. I was a very sick baby and the likelihood that I would die was
very grate. The doctors told my parents that because I was so premature that
I couldn't breathe on my own or do much else for that matter on my own, but
they could try placing me on life support and give me pure oxygen.
The warned my parents that even with the oxygen I had only a 10% chance of
living and that the oxygen would leave me totally blind and possibily
developmentally retarded. I would never read the printed word, be able to
care for myself, and would have to live out my life in an institute.

Well as you can tell none, save for the very poor vision, of the doctor's
proclamations came true. I have come to terms with the life I have, such as
it is. I have no more or less pain or happiness then someone who has all
their faculties and it could be worse, I could be that totally blind,
retarded person living my life out in some state hospital some place that the
doctors warned my parents about.
But looking at it from where I stand, even if I had been that totally blind
retarded hospitalized person, I would most likely feel the same about my
being totally blind and retarded as I do about not being totally blind and
retarded. What I mean is, this is the life I've lived, I know no other way
of life so for me this is so called normal.

I know I am a minority within a minority, because I think I have heard
someplace that disabilities are a minority and blindness is... Is.... How to
put this? Well it is very small percent of all disabled people... There
fore I know I have missed out on a lot of the rights of passage from child to
adult hood such as getting a driver's license, signing up for military
service, which I wanted to do when I was a girl, I thought it would be fun to
fly jet fighters for the air force and train dogs for the air force.

Also sins I went to public school for the majority of my education, I had to
put up with taunting for my classmates who did such memorable things as fling
grass hoppers at me, hit in my head with a 2 by 4 to see if my remaining eye
would go blind. Don't ask me why sort of thought process was going through
their minds because I don't know even to this day. I was an outcast at
school and even at home because my parents were ashamed of my being blind.
So it was a very lonely lifetime.
But I coped with it by reading endlessly talking books and writing and
drawing and doing all he things I was "Not going to be able to do” I did my
time in hell as a child but it's made me a stronger person and eventhough
sometimes I wish they would of just let me die, I feel there is a reason I
beat the odds and am the way I am…

>As for those rights of passage into adult hood, I've had something even
better then getting a driver's license... At the age of 18 I flew from
Wichita, Kansas to San Francisco, California alone and I received my first
guide dog. The joy and freedome he has given me is as close to driving as I
will legally get...

Why have I taken such an observed amount of space to absolutely nothing
pertaining to this topic? Well to understand where I stand regarding this
issue, you have to know where I've come from as a blind child to a blind
adult. And yes eventually my vision is 20/800 I call my self blind...
I want a child of my own more then anything in the world. I would not wish
blindness or deafness or anything else on my baby, but if God saw it fit to
intrust a child with a disability, I know he would also give me the strength
and courage to deal with it and the love to nurture my baby as best as I could.

In 1992 I met a guy and we started dating and we were engaged. In 1995, he
found out that the people he was living with had kidnapped him from his birth
mom, who had kidnapped him from his birth dad. In March of that year we flew
out to Phoenix to meet his mom and 2 half sisters.
His mom was very put off about my blindness and for the remaining 18 months
of our relationship she would badmouth me and say I'd only hold him back and
she and his dad started out just like we did and that we were doomed to fail
and he should just leave and come start over with her and all sorts of sad
music.

We met his dad in August of 95 and he had quite a different take on us. He
took us both and made me feel right at home. This was a much better meeting
then with his mom and I really came to love and care for his dad, his step
mom and his two little sisters.

After I returned home from California in 1995 we decided to strike out on our
own and got our first flat in February of 1996.
We had planned to get married in April of 97, and life was good. He went to
college and worked 2 part time jobs, I stayed at home and cooked and cleaned
and went on walks, a new and up until this point unheard of thing for me to
do, with my Gerard.

I went of to the rehab center for 3 months in the summer of 1996 and was home
over the 4th of July weekend... Eh hem... In August I found out I was
expecting, but I didn't want to tell my boyfriend until I knew for sure
sure... But as luck would have it in August he quite lost his mind and up
and left. I might add too that over the past 9 months of us living together
he became abusive, first it was yelling and then throwing things at me then
hitting... I thought, the baby would do something to make him stop once it
got here, but, that was really a stupid idea because a baby can't fix a
broken relationship...

Anyway to make this quick... He just up and left, leaving me with no place
to live, no money, he stole my SSI check, and a baby on the way he didn't
know about.
I had just started school and that was stress enough then this blowing apart
of my whole life, my whole reason for living, I then thought, happened, I fell
into deepest depression and started to drink very heavy and I don't know if
it was this or just what it was but in October of 1996 I lost the baby and
Became very ill with a kidney infection and bronchitis and just a lot of
stuff.

Now I am so afraid that I will not have children and I want one just one and
well like I said before if God wants me to have a child with an impairment
well he has his reasons for such a thing but I wouldn't knowingly have a
child who was destine for blindess or anything else in the was of a disability
because I think well how do I say this?
I think growing up as a blind child pretending to be sighted I left myself
open to a lot of well things. My parent's poor thoughts also my blindness
made me feel I would never have a boyfriend and I threw myself wholeheartedly
into the very first "love" relationship that came my way. Thus leaving me
open to put up with abuse and meanness because I felt then that was the best
I could do. And I wouldn't wish that on anyone.

I hope this makes some little bit of sense and I haven't rambled on too long.
Respectfully submitted, I remain,”

Ms. J. Rebecca Kennedy (Wichita, Kansas USA)

FROM ME: Interesting story. Read it again, there are several key issues here.”

**38. “I have posted early and after reading the other thoughts and what
everybody has said concerning the subject of will the baby be blind or
sighted I do believe that the main issue is the health of the baby as we
all know and can understand blindness is part of life and we all deal
with in our own way and yes there are fears that each go through and a
new mother has the fears as a sighted parents does and yet stop and look
at the end of the Provoker and see what has happened and the peace in the
mother and father when the child is healthy. as that is the main point
not blindness or any other disability as they know that the Baby is safe
in moms arms.”

Willie Burton (Arkansas USA)

**39. “At first I had no reply to make on this story but now, after reading these
responses I do have some thoughts on the subject.

I grew up being very nearsighted; I wore thick ugly glasses but I still did
Anything I wanted to do and made good grades in school. I got my driver's
license and a good job with Washington State. When I got contact lenses no
one could now tell I had bad eyes and I could see quite well now. When I
married we never really thought of passing on my bad eyesight to our
children. No one else in our families had this problem. Now I have 2
grown up sons with noe vision problem and several grandchildren with no
vision problems. Our daughter only recently had to start wearing glasses
and this only for close up work or reading. But there are worse problems
one can pass along to their children.

My family had a history of colon polyposes; this is a condition where
polyps grow in the colon and will very likely turn to cancer in the mid
life term. I never knew this, only that I had grand parents and uncles
that had cancer, plus my own mother died when I was only 4. But passing
this trait on did not enter our minds, nor did anyone else mention it until
our daughter was 4 months old. My own father died when my sons were still
small; he died of the same thing. When our daughter was 4 months old I was
diagnosed with cancer of the colon. It was only through surgery and God's
grace that I am alive today. With the doctor's insisting, steps were taken
to not have any more children. I became legally blind when our daughter
was 3 years old but blindness never entered the picture as to having children.
Today both my sons have had most of their colon removed because of these
many polyps and are constantly having tests to be sure they have no cancer.
One granddaughter has also had her complete colon removed because of this
same problem. Our other grandson is free of it as is our daughter.

So with this in mind I would say there are worse things to be born with
then blindness or poor vision. Had I known, I would never have had
children! Still what joy I would have missed even with the problems and
neither of my sons have wished they had not been born.

Blindness can be lived with; many other diseases are fatal! Which is worse?”

Ernie (Walla Walla Washington USA
ejonessr@bmi.net)

FROM ME: “His last statement got me… ‘Blindness can be lived with; many other diseases are fatal! Which is worse?’ Is this an issue of values?”

**40. “I have a friend who says, ‘I’d rather be dead than blind.’ But I often see him having fun. Its only when he has a hard time doing something because of his blindness that he says this. He says he’ll never pass it on, but I wonder? I also notice it depends upon who he is with and what frame of mind he is in determines what he says.
I think he is a good person and people like him deserve to be born, but after they are here, I think we need to make sure they get a good positive upbringing and make sure they have the support of a good positive group.”

**41. “This is my first time to send an opinion on an issue. I have found this to
be a wonderful forum. I, like many others have many strong feelings about
this topic. My husband Fred and his brother George have RP. I am an ROp
person so there is not a genetic factor for me. Once my mother-in-law said
to me that if she had known both her sons would be blind, she would have
had abortions. I was rather dumb-founded as I believe the world would have
be deprived of two extremely talented people.

We have three children and they all have learning disabilities, our
daughter not severe enough to be in special education. I find this to some
times be more difficult to deal with than blindness because it is an
invisible disability. Yet our ten-year-old son behaves in some impulsive
ways and we are judged in We decided to involve our children as much as
possible in our organizational involvement as they could have blind
children. We took our daughter to her first NFB convention when she was a
year old. They've only missed one convention since. They all have made
friends all over the country and have seen many wonderful sights. I also
helped edit a newsletter for blind parents. One help for parents is to
have support in knowing how to deal with issues such help parents raise
terrific children whetheras keeping track of toddlers. Together by being
there for one another we can help one another have a quality life.”

Mary Wurtzel (Michigan USA)

**42. “Although my blindness was not caused by a genetic disease, I have very
strong feelings about this one. First of all, no one can say for certain if
a child will be born blind due to genetics (except in a rare case where both
partners and parents of partners have the same disease). What a shame for a
child not to be born just because there might be a chance of a problem. I
certainly would not wish blindness on anyone, but it is, in my opinion, far
less horrific than other dread genetic disorders, such as cystic fibrosis.
What if Beethoven's parents had known he would eventually become deaf? If
they had decided not to have children, the world would have been deprived of
his wonderful music.

I also would like to respond to the person who wrote in about adoption.
Although adoption is a wonderful choice, the state, in it's infinite wisdom,
does not support adoption by people with disabilities. Although legally,
and officially, state agencies are not allowed to discriminate against a
couple on this basis, it happens much more often than not. Although no one
would come right out and say it, a couple with one or more disabled people
would certainly be shoved to the bottom of the stack when a potential child
became available. I say this because of my own personal experience. In
this case, it would be a shame for two loving potential parents to miss out
on raising a child. I am not saying this to discourage anyone from
considering adoption; there are so many children out there who need the love
of a permanent family. I am just saying that having a disability makes this
already-rough road even rougher. My hat is off to anyone who has the guts
to endure the process.

Anyhow, I think that the most important factor in any child's future is the
love of the parents. The child's potential to be born blind, or to inherit
a genetic tendency toward blindness shouldn't stop two committed people from
having a child.”

David L. Thurmond (Atlanta, Georgia USA)

FROM ME: “Should we have a Provoker on adoption?”

**43. “Hi. My feeling on this subject is that I 'approve' if that is the way to put it.
I feel that everybody (and baby) should have a chance.
If the child ended up blind, (s)he would still be an adequate person in the world, and capable of contributing to society.
The fact that the parent(s) are blind would be an added help to the child, as they would be a big source of help along the
way!
That's my answer.”

Diane Marks (Telephone@mindspring.com)

**44. “I just can't help thinking after reading the responses that if there were a way that blind people could be "canceled" before
they were born, what a void there would be in this world! Although no one would choose to be blind, it seems that it is
just an alternate wavelength in this human soup on the planet. I could not imagine my life without the visually impaired
people I have known for their unique qualities and their very essence. They are some of the most talented people I know
and not having them in this world would be devastating. Many of them show me the way in daily life and enrich my experience
while on this earth.”

Suzanne Lange Chico )California USA)

FROM ME: “A test of my humor here, but, “Yeah, my favorite bumper sticker reads, ‘Take a blind friend to lunch today.”

**45. “Your recent Thought Provoker was forwarded to me by a friend, and it struck such a chord in me that I had to seek you out
and respond myself. I don't know if my response is to late to be forwarded to the others on the list or not, but I had to
offer it anyway. I'd also like to know what I have to do in order to subscribed to the list. Anyway, here are my thoughts
on the matter of persons with disabilities giving birth to children who might potentially inherit them.

I was just sitting here on my lunch hour, eating and listening to my soaps, when a commercial came on about a book called
"Power For Living." The spokeswoman began by stating that she had lost her hearing at the age of 18 months. She went on
to say how, in recent years, she had realized her dream of being crowned Miss America.
Hearing this commercial directed my thoughts back to the "thought provoker" and its many responses that had been forwarded
to me the night before. After reading about half of it I felt rather encouraged, as the posts pretty much mirrored my
own feelings on the subject. However, the further I read down the list of responses, the more disturbed I became by their
turn. I hadn't planned to respond, as I am not a part of the list, but when I heard this commercial, I could keep still
no longer.

Anyway, back to this commercial and the deaf woman's message. Becoming Miss America is no small feat. Surely it must be
something that hundreds of thousands of "normal" girls dream of. This woman realized the dream, and went on to do wonderful
things with her life and was totally deaf.
Now... what if her parents had known she would be deaf? According to some who posted to the thought provoker, they would
have been selfish and cruel and irresponsible to have brought her into this world, knowing that they were passing on a disability.

For my part, I would say that that rather depends on one's position on and one's perception of a given disability and persons
with disabilities. I wonder what the former Miss America would say about that? I wonder whether she would have chosen never
to have been born over a life as a deaf person in which she would one day realize this wonderful dream. From the sound of
her voice and the content of her message, I doubt that very much.

Secondly, I would say that if one is going to take the position that to have children with the knowledge that those children
might have or develop a disability is selfish, cruelc and irresponsible, (and again, this certainly isn't my position) then
who is to decide which infirmities are too great to pass on to one's children?
I can assure you all that I have experienced just about as much ridicule, social pressure, and condescension because I was
overweight as I have because I was blind. Should my parents then never have had my sister because the tendency towards obesity
runs in their genes?
And what about even the kids who are going to be "normal?" Is it really fair for perfectly healthy parents to bring them
into this world as it is?

Many of us are old enough to remember a world in which children could play outside under the stars into the late evening
without constant parental worry or supervision. We can remember a world in which a parent could let his/her child walk down
the street to play with friends, or to the corner store independently. Parents, blind or sighted, could take their kids
to a park, or to a mall and turn their backs for a few minutes whiteout fear of the many child predators and other dangers
which befall many children today. Would most responsible parents do these things now?
Can't most of us who are in our 30s and 40s remember a world in which there was no need for "good touch, bad touch" classes
in elementary schools? A world where children weren't robbed of their innocence, and where the intimacies of life remained
a mystery until a much more appropriate age?
When you have any child you hope and pray for the best, but when you have a "normal" child, don't you know in the back of
Your mind, even if you never consciously acknowledge it that such problems as drugs, sex and violence run rampant among
our teens today? It doesn't just happen to teens with parents who are self-absorbed or just don't care either. It happens
to teens with parents who nurture and pray and have the best of intentions. Maybe not as often, but it does happen. If
we are being honest with ourselves, don't we all know that those are possibilities?
Can one be sure when they conceive and bare a "normal" child that he or she won't drive into the path of some wreckless drunk
driver one day and be seriously hurt or killed? Even if we don't consciously think about it, we have to know those possibilities
are there! Whenever we bring a child into the world, there is a chance that they will fall prey to some disease or lunatic.
The possibilities are endless, and the statistics are growing all the time. All you have to do is turn on any local newscast,
Or pick up any newspaper, and the major headlines have to do with murders, robberies, rapes, political scandals and God
knows what else. So shouldn't we all just stop having kids, even "normal" ones? Isn't it selfish, cruel and irresponsible
to subject them to the world as it is. I mean think about it! If that is your position as it pertains to disability issues,
then you can't have it both ways.

My point is that, with or without a disability, life is a gamble. the life of a blind person, deaf person, whatever does
not have to be any less full than that of a "normal" person, and all that I can say about a parent who brings a child into
the world with a disability is that hopefully they know that.

I am sorry to say that I have often not been happy with the way things have turned out in my life, but I cannot blame this
on my blindness. More often than not, my disappointments have resulted from ignorance of, or just plain failure to take
advantage of opportunities which were available to me. Other times, they were the result of the ignorance of others. There
are exceptions to these times of course, but there are for every one of us who dares to take a chance on this adventure called
life.
I for one, very much resent the fact that there are those who believe that my mother should never have given birth to me.
She knew of the possibilities, and still she gave me life. She did, however, elect not to have any more like me. This, again,
was based on her own feelings of guilt and her perception of blindness, and is a sore point with me also.
Just my two cents. Thanks for letting me contribute them.”

Diane GRAVES (USA)

FROM ME: “In regard to the passing on of a THOUGHT PROVOKER, do it. The above response is one good example of the nice things that can happen if we do so.”

**46. “My first response to the topic of discussion is that if I had a baby with
disabilities I would know that they would adjust to the physical
limitations but I would feel sad because I would know the teasing and
social isolation that might occur.”

JODY (USA)

**47. “Hi to all, well, as I was reading through the responses, I was wondering,
what do people define as "Normal?" I mean, everyone has their own definition
of normal. In my opinion, like the person in one of the last responses, all
we can't do is not visually view the world around us. Sure, there may be a
few other things, but hey, you get my point. AFter all, as I've said
previously, many sighted people tell me they're impressed by my
independence, and my continuing to reach for more. I guess I have
determination, and my blindness isn't going to let me down.”

Stacy (with a positive outlook on my nonvisual world, Wisconsin USA)

**f48. “This subject of deciding what "the child" will be is not as simple as it may seem. True, the possibility of having a child
with special challenges confronts every prospective parent. However, when one or both parents have a congenital defect that
can be passed on to their child, the only responsible thing to do is to consider what lengths they are willing to go to in
order to provide a happy productive environment for the would be offspring. With blind persons, as with many sighted ones,
Oftentimes the matter is never considered. Nature just takes her course and the child is there without preparation or forethought.

Under these circumstances, the only course left is to try to make the best of the situation. I personally know of many cases
where this has been the scenario.

The lack of forethought was not the only problem involved in this situation. The parents, one being blind and the other visually
impaired, were in a situation where they had to depend on others for transportation and other basic necessities of life.
Living in this dependent trapped environment what did the parents have to offer to their children in the way of building
self-esteem and dignity? To make matters worse, all four children produced from this union inherited the vision problem.

All of the children have been plagued with troublesome lives because of the inability to cope successfully with the challenge
of living as a visually impaired person in a sighted world.

Let’s face it. We do live in a sighted world, and if we do not learn how to adapt and to continue to readapt, we are going
to crash our little raft on the shoals of the river of our lives. But of course, we have the right to crash our own raft,
but do we have the right to deliberately jeopardize the lives of our potential offspring, who themselves may not be able
to navigate the perilous rapids of life?

It seems to me that the key here is "deliberate." I do agree that we blind parents are better equipped for teaching our children
how to be successful and well adjusted for life’s problems, but first we must be self-sufficient and well adjusted ourselves.
Our example in living and loving bespeaks volumes more than can be expressed by extensive training.

If a child is born into a loving family who wants it, the child will grow and thrive, emotionally, physically and spiritually,
in spite of any affliction with which it may have to live.

I suppose the bottom line here is LOVE. Love makes all things possible, --even successfully rearing blind or visually impaired
children. This takes the love and cooperation of both parents though, be they blind or sighted.”

Alfreda Trusty (Dallas, Texas
USA)

FROM ME: “Forethought and suitability! Think about how many different ways we have seen these to factors underscored in this Provoker? Makes me want to count off on my fingers all the various positives necessary to fulfill the ‘suitability’ factor and think of where we can gain them.”

**49. “This is a topic that I have always been concerned about. However in my
opinion, Most sighted people are more concerned about it than The blind
community. It really doesn't matter weather a child is blind, physically
handicapped, or perfectly normal for that matter either. I don't mean to
throw my religion in this, but aren't we all created by god, and in his
eyes, aren't we all equals. He makes us this way for a purpose. Sometimes
that purpose is not clear, sometimes it is handed to us from birth, and
sometimes we have already done it and not realized it. We all are here for
a purpose, even the disabled.

It really makes no difference weather you are perfectly normal, or have a
disability. Both disabled, and regular people can function side by side in
the working community, as well as society. Some times it can be more of a
struggle for the disabled, but in my opinion this just makes our kind
stronger. We may have to work harder than regular people to get where we
want to go, or even be accepted some times, but in the end isn't it worth
it. Whether a kid is normal or disabled makes no difference on weather he
or she should be accepted in to the normal society.

There are a few disabled people who have made their difference in the
world. Luis Braille is probably one of the most popular ones. Helen Keller
is another. However the one that I would like to draw your attention to
isn't that popular in my opinion, but, hopefully it will prove my point
about this topic.

It's a story about a totally blind couple who decided to adopt, since they
couldn't have children of their own. A few of these kids had disabilities,
and a few of them didn't. Naturally the sighted community had a few
questions for them. [Something along the lines of, (How can you tell
weather your kids are doing drugs, smoking, Etc.?) The Family then
responded with something along the lines of, (How can you tell if you enter
a room, or if something's cold or hot. Just because we have no sight
doesn't mean that hour other senses don't work. If one of them is smoking,
we can smell it, probably better than you can.)] Please don't quote me on
this, These aren't the exact words, but From the report I red about them
this topic did come up in a conversation of theirs.
Then again, this story may have been more popular than I thought. I think
they even made a movie about it. I remember reading about this story a few
years ago.
I don't remember much more about it, in fact I don't even remember the
couple's names, but I hope this story proves my point. Yes we are different
than most people, and yes we may do things differently, but we are all the
same, and we all can be accepted in to a normal society. It makes no
difference weather we are black, white, sighted, blind, or physically
handicapped, because we all are part of the same race. The race of man
kind. And in the end, isn't that what really matters.”

Vince Hiks (blindhacker@yahoo.com)

FROM ME: “He speaks of us all belonging to the same group and points out that though there are differences in some of the minor characteristics between individuals, we are more similar than different. Where then is it okay to, necessary to divide out individuals into smaller sub-groups?”

**50. “I was not going to answer this issue. As in reading your provoker it
brought tears to my eyes.
In fact it brings chills to my body as I sit here and type.
When I was married for 14 years we brought two healthy sons into the world.
We lost one at six months. I should back up we first had Joshua healthy and
strong. Then came the unborn at 6 months. Elizabeth, was next in line and
died shortly before being born. To which the doctors told us we shouldn't
have anymore children. Noting a possible eyesight. Along with the fact it
was a blessing as she could have been a carrier of the RP. It was very hard
to deal with and yet we wanted another child. To which we had a healthy son
Erik.

The question keeps coming up "What if” I would agree that if the parents
are strong enough to raise a child. No matter what the issue may be I think
in my heart the parents are doing the right thing. Where would we all be if
the babies were terminated?

Your question brought up on negative breeding negative and positive breeding
Positive.
Well, I learned in counseling (to which was not NFB or ACB) that if we look
at the fear straightforward and walk into it. We can come out on the other
side being a better person. That the means of surviving in this world of
ours whether we are blind or whatever the handicap. We need to have a
"Positive Flow" coming our way to deal with the general things in life. Let
alone our children. I wouldn't trade my boys for anything and glad that
we, my wife and I, at the time had the discussion and made the decision to
go forth to have our boys.

As painful as it was to loose two. Who really knows what is going to happen
during the birth of a child. It is a chance we all take. I say that for
both for the husband and mother. even though the pain is greater on the
mother.

If our country could get by the word "handicap" and bring children up in a
universal family full of love we would not see this problem. We have seen
In all the feed back that there is parents who are blind and parents that
are sighted raising a "handicap" person. In this case of talking about
blind that there is plenty of that too. After all in listen to the 15 year
old talking she/he was glad to be alive!

No it is not easy this world today to live as a blind. You know it is
not easy for any other handicap or either for some sighted person either.
If we keep our minds in the positive flow and if we know we can handle and
be a good parent. Then let us live in happiness love, care, compassion and
the willingness to show our feelings. That no matter what the child is
"blind" we can and will make it in this world.
Just talk to our children and let them know we love and care for them
REALLY!
The rest will fall into place. Oh, yes, it is ok for a man to cry in front

of his children. It shows that you have feelings.
Some of this may not make sense. As it is a hard issue for me even today.
Much love, compassion and care to one in all in brotherhood and sisterhood
of blindness.”

Gene F. Stone (Portland, Maine Casco Bay USA
Guide Dog Bowie at geno@maine.rr.com)

FROM ME: “What about the ‘what ifs?’ I’m sitting here wondering if when that phrase is used, is it more times than not meant in a negative vain? And if so, not to be repetitive nor simplistic, but what does it take to reverse the flow?”

**51. “I was the first of two girls born blind in our family. God only knows
how that happened. Our family was not as blown away about it as some of
our relatives and other acquaintances throughout our lives. Cruel things
were said at times. Our Mom was a strong advocate for our receiving
equal education.

When we became adolescents we believed that it was more important to
marry a man we loved and who loved us, rather than to quibble over
whether or not he was blind.
The same attitude seemed to be prevalent as we, (both married to blind
guys at the time) had our first child on the way, three-and-a-half months
apart from each other. Since we were not aware of the cause of our
blindness, there was no clue as to whether or not our children would be
blind. We and our spouses decided that we would love our children either
way, believing that there might be a 50-50 chance of blindness or
sightedness. It was not a big deal to us since we knew how to be blind
and could be much better than the average at raising our children whether
they were blind or not.

So far, our children are all sighted. They are now teenagers. Again,
we really do not know whether our grandchildren have any chance of being
blind or not. We are aware that there are other genetic conditions they
could have but blindness--God only knows.

I do not know how my niece and nephew feel about having blind children;
they haven't talked about it around me. I do know that my daughter is
very worried about it. This seems odd to me since she has been around
more okay-but-not-perfect blind people all her life. She has, in fact,
been around some very human and humane people and would not need to
worry. However, I believe she has possibly experienced cruelty from the
mouths of peers which have hurt her so deeply she cannot even find a way
to share with her own mother at this time. I have a feeling that
blindness is not as big a fear to her as how her family would be treated.
I think she feels that she has been pulled between two extreme
polarities--one that says that blindness is okay and one that says it's
the worst thing, peer pressure-wise. She seems to have decided that she
had to choose a side and for several years, has turned to the side of her
peers, since this seems to be easier for her now. She knows our
philosophy; she knows the truth, but sometimes what one's friends say and
do wins out. It feels like a betrayal to me sometimes. I even think
sometimes that I must not have trained her well enough. However, I know
that the main reason she is going through this process is that she is on
her way to becoming herself. It would be easier if she "sided with us"
but, you know, it's like their music--if I like a song that she likes, I
do well to keep that to myself. It's a phase, I keep telling myself.
She is studying psychology in college and has the opportunity to learn
some very helpful info as she attains her degree. She even has a Mom she
can still learn from sometime, when she's ready!

I feel that if my daughter had children now, she would not handle
blindness well. One thing about it; I think it has helped her keep from
having one before she's settled reasonably. I hope that by the time she
has children, if she chooses to, that she will be a grown-up and will
have read all the things all of you have written here and remembered some
of what she lived with all of us okay blind people around. I know I
would love any baby of hers because I love her so much!!! A loving
environment is, as has been said, absolutely the most important factor in
raising okay kids--normal ones, too, blind or not!”

Laurie Merryfield (Washington USA)

FROM ME: “It would be good to hear from sighted children of blind blind parents; haven’t yet to this point. Who can help us with that, please?”

**52. “When I think of blindness or being visually impaired admit that my creative, more abstract side comes out.
I do not think of it was a curse or a bad thing. My
vision at best has been 20/200 and right now is stable
at about 20/300 or so. I see one big advantage to not
being able to see, you have what I call true vision.
You are able to see the people of the world for who
they really are, not the physical, you see a person's
heart. So many times in my life I have wished
everyone could have that kind of sight, wouldn't we
all get along a lot better. I often felt that way
growing up when the kids at school were so cruel to me
because I was "different".

My other thoughts on this subject come from a couple
of different angles. On the one hand, I find myself
thinking of my mother. I inherited the eye disease I
have, and won't even try to spell, from my father. My
mother knew that if she ever became pregnant and had a
child there was a 50/50 chance the child would be born
with this disease. She didn't care, though. I think
part of that was because she is disabled herself, she
had polio. Over the years I think that's been a help
to me, it made it easier knowing she understood on
some level what I have to deal with. Because of the
polio, it was quite dangerous for her to have me, that
was just another reason people told her not to have me
at all. But, I was her gift from God she'd waited so
long for, eight years of wanting to become pregnant.

I cannot say what my father thought, I'm not sure he
really had an opinion or cared about the possibility
of me inheriting the eye condition. When I was born
they knew I had it. I had a special teacher who came
to our house my mom has told me and this teacher was
amazed at how well I did, really I was no different
than any other baby. I didn't know I couldn't see as
well as everyone else. And that has held true all of
my life, to me 20/200 is the same as 20/20 because I
don't know the difference. My mom did everything she
could to help me through the years, but at the same
time she let me find my place in the world and be an
independent person. In my opinion she was able to do
a near perfect balance of the two. She knew that I
needed a solid support base, and that I also needed to
explore the world. She never treated me any different
than she would've if I had 20/20 vision. Okay, sure,
when I needed it she probably held my hand and guided
me along, but you know what i mean, she didn't pity
me, she didn't act like "poor little Wendalyn she
can't get along as well as the other kids."

I also look at this topic from the point of view of
how I feel as someone who would love to have children
someday. I love children and I want to have children
someday. I will admit that there have been times when
I've wondered if I did. That was because I wasn't
sure I wanted a child of mine exposed to getting hurt
by their peers the way that I was hurt. Did I really
want to have my child come home crying and have to
tell them it was going to be okay when I knew it might
happen again tomorrow. I know the possibility that my
child will inherit the eye disease I have is as real
as it was for my mom. But, then I think about what if
my mom had remembered back on her childhood and
thought "I don't want my child to have to go through
that" and ended the pregnancy, I wouldn't be here. No
matter what life has been to me at times, I'm quite
glad to be here. Like many diseases and disabilities
there is no cure for mine, so it's not like that goes
into my thinking process on the subject. Many people
have said to me, "can't you have some operation" or
"maybe someday there will be a cure." Another one I
get is, "nowadays can't they like take out the bad
genes or choose the eggs with all good genes." Lots
of things are happening in the world and if those are
some of them, that's alright by me, but I'm not
betting the farm on it. What it always comes down to
for me is that someday, God willing, I want to be able
to hold to future in my arms, and maybe see well
enough to look into that sweet face. I want to be
able to know that I might be able to help make this
world a better place because of this little person.

When it comes right down to it, it doesn't really
matter if she/he can see 20/20 or not at all. Look at
Helen Keller, look at what she did in this world.
There have been so many people. Maybe I'm just a
sentimental mushball, but the older I get the more I
think about what wonderful things my child could do
and I'd be right there by their side the whole way
thinking, "yep, that's my kid, ain't they wonderful"
just like any loving parent of any child does.

Before I end things here, I have one more thought. I
know that ones family plays a part to. When I was
born my grandmother did everything including make a
mean comment to my mom, if I recall it was, "how do
you like your baby now?" I know that no matter the
opinion a person comes up with for themselves their
family may or may not agree. In my case I know my mom
will love any children I have to piece and she has
told me she will spoil them rotten as that is a
grandmother's job (ha). I must tell a short story,
though, to show my point. I was five months old when
my first Christmas rolled around and we came back to
visit my mom's folks for Christmas. I think my
grandma thought I was going to look like some freak.
Meanwhile, my grandpa was going up town to buy my baby
formula so my mom wouldn't have to bring it on the
plane. My mom told me we walked in the door and my
grandma took me from my mom and it was like she was
surprised, I looked like the rest of the
grandchildren, in fact I was just cute as could be!
My grandpa didn't see any reason to think anything of
the fact I couldn't see that well. I was his baby's
little girl. My grandma warmed up to me as much as I
think she does anyone eventually. I think she just
had to get used to the facts. Some people are like
that, doesn't make them bad necessarily, just means
they might be comfortable in their world and something
different, outside of their norm, they have to get
used to it. My point, always do what you feel is best
for you (and your spouse). In the end no one can know
what you want and what is best for you but you. You
control your happiness and if you want a child, no
matter the risks that is your choice. Just as it is
your choice if you don't want to have any children
because of the risks. The choice is a hard one and
myself I have thought of it, oddly enough, since I was
a child myself and I will continue to think about it
for years to come.”

Wendalyn Omaha (, Nebraska, USA)

FROM ME: “Think about what you just read, the individual you just experienced. What if the “what ifs” had not allowed this person to be? Remember what her statement was on that specific question.”

**53. “I don't have too much more to say, but I thought I'd write
in one more time. Most of you have probably picked up on my rather
optimistic views of blindness. After all, blindness is only a physical
nuisance, and we can certainly avoid many difficulties. As many have
pointed out, it's all in the attitude.

I truly don't think that just because a person is blind, deaf, mentally
retarded, or any other form of disability makes them subject not to have a
life. God puts all of us on this earth for a reason, and I think that
privilege should be given to all. The disabled population, in my opinion,
are what make the world unique. In fact, I spent part of today at a
basketball function of my brother's, and I had a braille magazine. One of the parents of one of the other players, suddenly asked me some very minor
questions about what I was reading, and how the dots worked etc.

Hope I haven't rambled too much. I'm known for rambling in conversation, so
i guess I can be known for it in e-mail too. (big smiles to all)

Stacy (Wisconsin USA)

**54. “I wasn't going to respond to this but thought I would after reading
this update. By the way, Mary's husband and brother in-law are great
people and she's right, it would have been a shame if they had not
been in this world. But, to get to my point, my husband was told that
he would definitely have children with the same problems as he had.
He was blind and partially deaf and had a myriad of health problems to
deal with. He chose to have a vasectomy so we would not have
children. I tried to talk him into letting me try to get pregnant by
insemination by an unknown donor but he was of the opinion that this
world was not a great place to bring up children. The one
disappointing thing was that later on in our marriage, a resident said
that they had misdiagnosed my husband's condition and that we would
have had normal children. Because of his medical condition and one
that I had, we might not have been able to have children anyway. If
it had been just blindness or just one other condition, I would not
have had a problem with having children. But with the multiple
conditions, I thought that that was too much to knowingly choose for a
child. A question I'd like to bring up for another thought provoker
is: what would you do if you were in a position like mine before I
was married being told that my husband was not expected to live as
long as most people and that we should not have children because of
his condition? Would you choose to marry anyway? I chose to and have
never regretted it. He didn't live as long as most people and I felt
the loss very much but if I had to do it over again, I would because
he was a wonderful person.”

Marcie Brink (Kalamazoo Michigan USA
616-344-7297)

FROM ME: “Talking about “What ifs!” With out reading back through this response, can you accuratly count how many “What ifs” there were?”

**55. “I am distressed by the fact that although we are dawning on a new century
and the technology is abounding and has opened so many doors for the blind,
I feel and can see in my own experience that we are not to much better off
then we were in the 60's. Yes, we have more rights and more money in the
SSDI benefits, and hopefully we can get the linkage established, but the
acceptance is just not quite there. I might be losing my job due to cut
backs and although I have my foot in the door and have a perfect work
record, I am having a lot of trouble getting interviewed Vs my sighted
counter peers. There is still the annoyance of the public when being asked
for rides, even when I do give them money for gas and they just don't really
like it when asked on a regular basis. Yes, I suppose I could move to a
larger city that had transit all the time and side walks, which Huntsville
is lacking a plenty and the public outcry in opposition to them is very
loud. I honestly feel that a child born with visual problems will still for
quite some time have a very hard life in proving him/herself, and will be
bombarded to try this or that new eye chip that is coming out.”

Renee Michele Zelickson (Huntsville, Alabama USA
http://home.hiwaay.net/~reneez/
RenICQ # 26688097)

**56. “This is a problem that affects all of us, blind or sighted. I passed on to
my daughters my low blood sugar problem. One of them got my eye problem, and
an additional one of her own. The other got my father's eye condition (he
was farsighted) as well as amblyopia. Both got my dark hair. One got her
father's curls, and the other got my mother's straight hair. One got my body
type. The other inherited a body type from her father's family. And so on.
If we keep in mind that there's no shame in being blind, and that a baby is
valuable as a human being regardless of what he or she inherits, the problem,
and the decision goes away. The only time it comes back is if the gene is a
lethal one, such as Tay Sachs, in which case, the baby's life will be short,
and only heartbreak is guaranteed, unless the parents are remarkable people.”

Lori Stayer (Merrick, New York USA)

FROM ME: “Here is yet another response that speaks of vision loss as a characteristic. I’ve seen this oppinion expressed very clearly many a time in this Provoker. Think back on how else vision loss has been referred to. Then, look at those terms, those concepts and think to yourself, ‘What, why…’”

**57. “Being blind some would argue that its a pleasure, where others would say
that its a harsh acceptance to life.
When thinking of starting a family, we all ponder the thought of having a
perfect child.
Being totally blind myself, I struggle with this thought, only to wonder,
that my girlfriend whom I love dearly, has to wonder about it more.
Julie, is sighted, and yes I wish to have children with her in the future,
but when anyone has children, the few things to really think of is:
1. Does the potential parents have the maturity
2. Is their a desire to bring new life by both in to the world
3. When the child is born, are the parents going to look at the child as a
lovely creation of theirs, no matter what?

Let the parents have the energy, stability, and willingness among themselves
to handle and raise that child to be anything the child wants no matter what
situation.
Thanks”

Stephen A. Guerra (BlindLaw)

**58. “To take a line from Fiddler on the Roof, "It's no disgrace to be blind, but no great honor either."
(BlindLaw)

**59. “Oddly enough all though I have a genetic condition that lead
to my
blindness, I never gave much thought to whether children
fathered by me
would be blind. I was not ready to start a family and
determined to think
on it when that seemed closer to hand. I knew of a blind
woman who had
twins and they were both legally blind. One has little
vision and the other
is close to legal blindness. The mother knew her children
would inherit her
condition. They could have little noticeable loss of
vision, or could be
totally blind as she is. Nevertheless, she elected to have
children. That
got me thinking about it myself.
She received a lot of criticism, but I realized that I truly
respected her
choice. She could teach necessary skills to her children,
and help them
have confidence in their abilities as blind people. I
thought that
depending on what my partner would feel (when I found one) I
would favor
having children even if there was a risk of possible
blindness.

I now have a partner who is blind. She did not come down on
the same side
of the question. She opted not to have children at all.
We've talked about
this difference a lot. The seeming difference is that she
has glaucoma, and
has often been in pain and had many many surgeries on her
eyes before
finally losing her vision. I have never suffered any pain
or discomfort as
a result of my blindness. In fact, I am in my middle
thirty's and have
never been in a hospital, but for once as an infant.

My wife has a blind sister with no desire to have children.
One day the
topic came up in the family. My wife asserted that she did
not wish to put
children through pain, nor did she wish to watch her
children go through the
surgeries and treatments her own parents watched her have.
My blind
sister-in-law asserted that it was irresponsible to have
children if there
was a significant likelihood of disability. I defended the
choice stating
that few people would be better able to teach children to
live as blind
children better than I could. I stated that I believed it
to be a very
personal choice, but that I would support one's having
children even if
there were a significant likelihood of disability. We all
have the right to
make the choice. Another sister-in-law, who has vision,
insisted that I was
being short sided. She stated that my life has been
miserable, and that it
would be unfair for me to flippantly permit someone to be
born blind knowing
how hard life is for me. I argued that I never thought my
life that hard.
Many of my difficulties in life have little if anything to
do with being
blind. She countered that I was missing something, but that
in any event I
was the exception and not the rule. Being blind is a much
harder way to
live, and I have unusual gifts to navigate such difficult
waters. I
countered that I may have some unique difficulties as a
result of blindness,
but that I think everything balances. With possible
difficulties there are
also advantages. We agreed to disagree. I do think that
with the
federation, the development of technology and other factors,
it is getting
easier to live as a blind person.”

Jim McCarthys (BlindLaw)

**60. “For the first time in a long while , I hear and sense real
feelings here. all of us seem to agree it does not make a difference if the
child is born blind. One thing I also hear is education. We all agree that
the public and many visually impaired folks need to be educated. so I
thank you for this one and for your personal input also. Let us as a Nation
move on with life. A child is a child, is a child. We are all fortunate to
have the children we do have and " let it be." Help us, help them, who need
to be educated and never, ever doubt what child is chosen to be with us as
adults. thanks so much.”

Lee a. stone (Hudson, New York USA
stonedge@mhonline.net)

**61. “Since I saw few responses from sighted parents of blind children, I
thought I would add my opinion. I have a two year old who is totally
blind. As far as my husband and I know it is not a genetic condition.
But its not like doctors have never been wrong before. Even if it was
genetic, it would not stop us from having another child, if we wanted
one. I have even considered adopting another visually impaired child.
The thing is right now in our lives can don't want another child,
perhaps in another year or so. Most of our sighted friends, and family
think we aren't having anymore because we are scared of having another
blind child. This is not so the case! You see, I already know what I
need to about raising a blind child. I often think it would actually be
weird to have a sighted child, so much different then our 'normal'
lives. I agree that a blind parent would be the best parent of a blind
child, simply for the knowledge a sighted parents wouldn't have from
that aspect of life, and I often turn blind adults, and other parents of
blind kids, before I go to my own mother. Maybe partially for the
open-mindedness, and expertise in that area. As far as I am concerned,
there is nothing my son can't do, if in his life they find a 'cure' for
his blindness, great! But I don't spent my days and nights wallowing in
pity for my child and wishing he could see.”

Christine Jeune (Southern California USA)

**62. “I think many have become wrongly focused. It is unfair to speak ill
of the many people that would not have lived if parents chose not to have
children for one reason or another. Indeed, how about all those times some
of you placed a condom upon your member, or all those birth control pills
that prevented the birth of what might have been blind or otherwise disabled
children? We all choose to prevent births for a variety of reasons, but
never should we feel that another's reason for preventing a birth is a
condemnation of our own lives. My parents had 16 children and raised 15 of
them. Had they used birth control early in their relationship I wouldn't be
here. Should I then condemn those who use birth control? I think not. We
all live as we see fit, and the only thing important in life is that we be
happy, kind to others and contributing members of our society. Just because
my parents chose not to use birth control and allowed me to be born, I will
not condemn those who choose for their own reasons to use such things.”

Albert Ruel (Victoria BC Canada
albert_ruel@telus.net)

FROM ME: “Anyone else out there have feelings, an opinion on this end of the thought? Are there any of you who are in a position in a church/religion that can speak to what your beliefs are where genetics and a disability and birth control are intertwined?” And, what else are we missing? And/or is this one a comparison between apple and oranges?”

**63. “When I got married, I honestly didn't know whether I could deal with a
blind child. My third child lived a half-hour. My fifth was born blind,
though the doctors didn't think it would happen. I'd rather have Number 5
than Number 3. All of my children got what I considered the most
important--love, support, discipline. Every person in the world has a
handicap; ours is just a bit more visible.

My husband and I are both blind, so there was no added guilt that I was the
cause of my daughter's blindness. And because she was part of a large
family, she didn't get treated too much differently from the others.”

Marilyn Lundgen, Mickey (USA)

**64. “This is a very difficult question and one I won't ever have to answer unless
i marry someone with a hereditary eye problem.

I think that if I were pregnant and it was discovered that the baby could be
blind I would have the baby anyway and surround it with as much love and
support as I am capable of giving. I think I would want to have a baby,
even if I knew it would be blind.”

Richelle (Blindfam)

**65. “I think if the baby is blind, it still can lead a normal life just like
sighted people.”

Beth Kats (California USA)

**66. “I'm glad to hear that the responses were so positive to your question
regarding whether blind people who are likely to pass on blindness should
have children. This reminds me how horrified I felt when a blind friend
told me about an experience that affected her profoundly when she was a
young child. During a conversation, her friend's mother said she would have
aborted my friend (presumably because of her blindness).
I know you're talking about whether to have blind children, not whether to
abort fetuses who will be blind children, and I am not against abortion so
that's not what I find so horrifying. But I think that this comment and
your question both go to the core of what we consider to be a worthwhile
human being, and considering whether we should actively prevent bringing
people who are blind into the world.”

Dona Sauerburger, COMS (1606 Huntcliff Way, Gambrills, Maryland 21054 USA Sauerburger@mindspring.com)
301-858-138 (V/TTY)

**67. “Dona, There's more to this than you might think. It's not a question of
whether a blind person is a worthwhile individual-- obviously the answer is a
resounding "yes." But we live in a country and a world that is not willing to
prioritize the education of blind individuals, and most of our total
congenitals aren't getting what they need and are doomed to a life of
dependency, much like the severely handicapped. (The Kelsos and their
situation are a hot topic on all my lists.) The parents of a blind child
spend their lives trying to "squeeze blood out of a turnip" as the cliche
goes-- ie. get educational services where there are none. This is a
life-altering situation: very much like the t.v. commercial depicting
alcoholism as a wrecking ball in the lives of those involved with the
alcoholic-- that's exactly what raising a significantly disabled child is
like for the parents, particularly the parent (usually mom) who has primary
responsibility for the child. So the abortion comment may have been the cry
of a mom who has seen her life, not to mention her child's, sacrificed on the
altar of disability in a country that just frankly doesn't give a darn. I
wake up every day with this as my first thought-- another day of a life I
certainly hadn't planned and resent to a great degree-- I do not blame my
child, but the foolish and heartless state, country, and society I live in.
But, as they say, "bad stuff happens and life isn't fair." The newsreels of
Bosnia are somehow comforting-- at least I'm not there, being bombed. But
then I see all the disabled kids injured by this war, and I get sick to my
stomach all over again. Sorry, this isn't much of an upbeat post, but try not
to judge people by the off-hand comments they make-- at least until you
understand the whole story.”

(AERnet)

FROM ME: “Yes, I believe many of the respondents to this Provoker, though positive about taking the chance to have a genetically blind child not only said it is worth it, that it is doable, that life for the family can be good, they are also saying that it can be tough. The ‘tough’ part of it means, that for some families and for some individuals it will be very tough! After all, like with any human under-taking, there will be the proverbial spread of success, the old bell curve, continuum ranging from the very successful to the least successful. So then along the way, (not wanting to sound to simplistic here) we look at the factors that make some successful over the others. Then each group involved with this thing, like we the professionals learn what works, what is needed and we try to provide it. Second the parents look at how others do it better and they strive to personalize those efforts into their own approach.

I look back through what people hold up as key factors making their experience work and I see- philosophy, confidence, skills, support, faith, modeling, etc. There again, as this response also holds up another important key ingredient, ‘opportunity.’ What do you all think?”

**68. “my husband and i are both blind and we have a six-year-old sighted
son. when i got pregnant the doctors and my family had many questions
about whether or not aaron would be born blind. we talked it over and
found out that the chances were pretty slim because my cause of blindness
is not genetic and my husband's is but we both have to be carriers of a
certain genes. we decided that we would not worry about it and we would
wait and see what happened. no matter which way it went he was going to be
our baby and who better to deal with a blind child than two blind parents
who already know the problems he or she would have to face. i don't regret
my decision and i think that we will handle it the same way in the
future. after all, we are thinking of having another baby right
now. thank you for listening.”

Tammy Robbins (Lisbon, Connecticut USA.
icon@uconect.net)

**69. "Here is my final thought on the baby Provoker, then I'll shut up on it.

I have seen so many entries on here mentioning five, six, eleven, fifteen
children... I feel a cold, dark sinking in my middle. Look around yourself
and see what kind of life we have. If any of us here on this list are at
all 'typical' of the blind community, I'll tell you what life we have. We
live, precariously, in rented apartments, sometimes shared with two or
three others, to make the rent. If we do work it is at a low level job, a
sheltered workshop or making a lot less than our sighted counterparts. More
likely we are on Social Security or welfare.
A blind person, statistically is faced with dependency, poverty,
discrimination, unemployment and social nonacceptance. Can you honestly
look into the figurative eyes of your not-yet-conceived future child and
say "Daughter, I give you, as your legacy, poverty, discrimination, the
cruelty of your schoolmates, sightlessness and social isolation."? People,
is it THAT damned hard to have a tube tied or a condom on or a pill taken?
Are we THAT inept that we have to turn out one more generation of sightless
people?

We lack for the very most basic necessities in a land that is brimming with
choice... for sighted people. FOE SIGHTED PEOPLE! We lack affordable
housing. We lack affordable health care. We lack the very most basic
Bare-bones transportation. We have to beg, hat in hand, for a ride here or
there. We have to fight for the paltry right to walk into a restaurant with
our dog. We take our very lives in our hands crossing the streets! NO
minority group, not the Blacks, not the Hispanics, nobody, has a worse
employment record than we have! We are at the bottom of the heap in the
DISABLED community! The ONLY group that has a lower employment rate are the
QUADRIPLEGICS! THIS is LIFE?!

What if my parents had thought that way? I would desperately wish that they
HAD! The only reason I never accused my mother to her face of selfishly
dragging me into the world is because, thank God, she was raped and
strangled at 33 years of age. The man who killed her did the world a
service. But not before she had whelped FOUR disabled children! Do I like
my life? Maybe, maybe not. Will I die of old age? No. When the government
finally decides they've had enough of helping blind people, when the money
runs out or when housing is too expensive for me to have a home... and that
day WILL come... I will not be homeless. I will die. Easily, painlessly and
surely. I have NO intention of living in a land that doesn't want me.

Did my mother give me life? No, she gave me existence. What Americans call
life is a house, owned, free and clear, in a fair to good neighborhood, a
car, reliable transportation, a good paying job and a future. Savings
accounts and retirement in the bank. I have NONE of these and if you are
ANYTHING like me, neither do you. Neither will any blind child brought into
this world. LOOK at yourself and face facts, people, the country does NOT
like us, does NOT want us and doesn't give a damn about ANY of us. OR our
future children. If you don't use contraception, if you purposely bring
another child into the world, it is very likely on the taxpayer's tab. And
there's precious little enough to go around as it is!

The ranks of the homeless before us were the mentally ill people turned out
into the community when the mental hospitals were closed. The government
decided they didn't want to keep paying to take care of them. We're NEXT!
Those are FACTS, folks! The first wave of street people were disabled
people, themselves. The next wave will be us! If you have ANY hope for the
future, save your sleeping pills, buy a gun, keep a copy of the Hemlock
Society's book on self deliverance, because to live blind in America is not
to live at all!

And if you want to drag religion into this, ask yourself if God has put a
single mouthful of food in your belly. Praise your God when the kids on
the playground throw rocks at your youngster and call him 'Mister Magoo'.
Sing hymns when your blind teenager comes home from yet another
unsuccessful job interview. Think about salvation while you fill out the
Social Security forms that are routinely turned down. Did you know that? The
Social Security ROUTINELY turns down ALL requests, figuring that only the
most motivated applicants will re-apply. Say Hallelujah when your child
finally GETS that sliver of money that will enable him or her to live like
some kind of marginalized house-pet on Uncle San's tit. Sharing a dingy flat
in a miserable dangerous neighborhood with his blind friends. Pray for
strength to answer your child when he finally turns to you and says "WHY?
Why did you do this to me?" Tell him God made you do it! To bring a child
into this world when 95% of us cannot even support OURSELVES is idiotic
beyond belief. The only time your beloved religion will do you ANY
practical good is the hope of an afterlife when you go.
I don't intend to live in a cardboard box and no child of mine will either.

I am ashamed of ALL of us for this ridiculous child-worship that blinds us
to the truth! To live blind in America is not to live at all."

Sylvia Stevens (California USA)

FROM ME: "Well, that's one way. But that's not my experience, though I've seen some of that around me. I've also seen some better than me too. So is there anyone else out there who feels like this lady and are willing to share their feelings? (She also submitted number 13.)

Being a person who works at being a counselor, a teacher and humanist, I find myself wanting to 'help' a person who feels as this lady does. But I'm questioning if a single response by me and/or a dozen by you who are reading this will do it.
Though I do believe people can learn, change for the better, (I created this forum and you know its purpose) but I also accept that the worst can be for some and that can't be changed. What do you say?

The flip-side of this is that most people can achieve positiveness. And second Everyone can do better than they think. And I bettheres many more positives too, right?"

**70. "This is from Willie again and I believe that Tammy Robbins said it
best and put it all in a nutshell. The baby is healthy and it is her's so who better to deal with life than her and her hubby. They have already
walked the road and know what to look forward to and they can be better
parents than we could ever think about. Remember one thing we do not know
what life has in store for us and we must deal with each problem as it
come up and for a parent to worry because of medical problem in either
side of the family that is natural and that is a chance that each one of
us take just by getting up ever day we do not know and we worry as we may
not show it we do and that is part of life. Tammy said that she was
happy and was hope for another baby and that shows me that only the
parents know what is best for the child."

Willie Burton (Arkansas USA)

**71. "In response to response 62, you ask:
>FROM ME: "Anyone else out there have feelings, an opinion on this end of
>the thought? Are there any of you who are in a position in a
>church/religion that can speak to what your beliefs are where genetics and a
>disability and birth control are intertwined?"

I am fully prepared to speak to these issues. The Bible does not intertwine
them in any way, from which we should infer that we should not intertwine them either. It does, however, deal with each of them on an individual basis, and I
shall endeavor to give you a quick summary of what God has to say.

God takes full credit for whatever disabilities we happen to have been blessed
with. Exodus 4:11, for example, says, "And the LORD said unto him [Moses], Who
hath made man's mouth? or who maketh the dumb, or deaf, or the seeing, or the
blind? have not I the LORD?".
We are to have the highest regard for any child, as the development of that
child, even within his mother's womb, is under the direct personal supervision
of God Himself. Psalm 139:13-16, for example, says, "For thou [God] hast
possessed my reins: thou hast covered me in my mother's womb. I will praise
thee; for I am fearfully and wonderfully made: marvelous are thy works; and
that my soul knoweth right well. My substance was not hid from thee, when I was
made in secret, and curiously wrought in the lowest parts of the earth. Thine
eyes did see my substance, yet being unperfect; and in thy book all my members
were written, which in continuance were fashioned, when as yet there was none
of them.".
God is emphatic that we are not to ever use birth control. Genesis 1:28, a
passage dealing with the creation of man, begins, "And God blessed them, and
God said unto them, Be fruitful, and multiply, and replenish the earth". He
repeats this command, in Genesis 9:1 (immediately after the flood), which says,
"And God blessed Noah and his sons, and said unto them, Be fruitful, and
multiply, and replenish the earth.". It is important to note that this command,
given twice for emphasis, has never been rescinded.
God explains that no conception ever takes place simply as the result of the
intimate union between a husband and his wife (or even between a man and woman
who are not married to one another). While He chooses to work through such a
physical union, conception also requires His direct and deliberate intervention
in the person of the Holy Spirit. Psalm 104:30, for example, says, "Thou
sendest forth thy spirit, they are created: and thou renewest the face of the
earth."

We are to consider all children, i.e. each and every single one of them,
regardless of the circumstances surrounding their conception, gestation, and
birth, as tremendous blessings. Psalm 127:4-5, for example, says, "As arrows
are in the hand of a mighty man; so are children of the youth. Happy is the man
that hath his quiver full of them: they shall not be ashamed, but they shall
speak with the enemies in the gate."

Dave Mielke (856 Grenon Avenue, Ottawa, Ontario, Canada
Phone: 1-613-726-0014,
EMail:dave@mielke.cc,
Web:http://dave.mielke.cc/)

FROM ME: "This was from the Christian point of view, any other groups willing to share with us on the same question?"

*872. FROM ME: "This is written in response to #67."

"I grew up in a home that had two disabled children. They both died before I turned ten. The result of this was alcoholism for my parents and two surviving siblings.

Anyway, I never felt my brothers were a "wrecking ball." But I was a small child, right so what did I know? Children see more than people think. I saw my parents argue and cry as they agonized over each decision. I watched my sisters do drugs and drink to get my parents attention. But I also saw incredible love.....my grandparents, who were sickly, coming to my parents to give them help. My father, who is not an emotional man, breaking down and crying because he couldn't fix everything.

My first brother had everything. He had specialists, meds, etc. My family revolved around him. There was laughter in the house, toys for the children, and hugs a plenty. He died the same year as my maternal grandfather. My mom changed after that.

My second brother came along and, at first, there was no trace of Muscular Dystrophy. But by 18 months it was obvious. And by 3, he was visually impaired. He died the same year as my paternal grandfather, my babysitter, and my dad's best friend. Life would never be the same for many years to come.
I saw the disability as a challenge to our faith and our strength. It is only a wrecking ball if you choose it to be. The wrecking ball was the alcoholism and the problems it caused.

Disabilities are just that if you let them be. The family must decide. Turning to the bottle is never the solution to ANY problem! Sorry to ramble on but alcoholism's destruction to lay down beside disability's wonder just got to me."

Elizabeth Eagan (Houston, Texas USA)

**73. "I just really had to read the responses to this one. While my initial
thought was to contribute my personal thoughts, I am in a more reflective mood after reading the responses. Our human experience
is so universal and so unique at the same time. In turn our thoughts and actions are shaped by both this universality and
uniqueness. Well, to get back down to earth before my lunch is cold, I'll tackle the subject at hand. I am totally blind
and the mother of a twenty-three son and daughters 8 and 9. My blindness is not genetically related. I am a long-time member
of the NFB and consider blindness a characteristic among many other in my life. I consider my children to be a gift from
God and an awesome responsibility. They are each wonderful and unique with many inherited and acquired traits of every variety.
I enjoy doing the everyday things we do together--eat dinner and discuss the day, play cards, attend my daughter's basketball
game, discuss the experiences of college life with my son. I am afraid for all of them as they venture out in to this "cruel"
world. Blindness seems a small part of this mix to me. Yet I know it is not this way for everyone. Although I knew my
daughters could inherit their father's inherited eye disease, RP, I never considered not having them. Someone told me there
was a twenty-five percent chance of inheritance. However, when an ophthalmologist recently told me that what he saw in the
eyes of both of my daughters indicates that they have probably both inherited the disease, although they are both totally
sighted and symptom free at this point, I was more shaken than I had anticipated. I still think that blindness is far from
the toughest problem I have faced, and I still believe we will be able to deal with the RP better than many other families
because of the NFB philosophy and my ability to provide positive role models for my girls. But, of course, I would rather
that my girls did not have to experience this particular characteristic. Why? It's not the loss of sight that worries
me, although that would be a big loss for the girls and should not be denied, it is the public attitude and resulting discrimination.
Well, I've eaten my chili and it's time to get back to work. There really wasn't a lot to say, but I hope I've added another
perspective."

Catherine Close (USA)

FROM ME: "Being a member of an upbeat consumer group can't be beat. We'll have a Provoker on this issue soon."

**74. "Let me start off by saying what I am about to say may
offend some people Also, I'm not promoting any
certain religion or religion at all, I know that is a
personal choice. But, for me this meant a lot and
maybe it will to even one of you. Someone passed on a
song to me that reminded me of our current topic and I
felt the need to share. It is a song called
"Sometimes Miracles Hide" by Bruce Carroll. It
reminded me so much of what I said before in my
previous post and how I feel, not only about me coming
into this world but also having children of my own
someday. I really felt the need to share. Thank you
Robert for allowing me to share this and share a
second time. So here are the lyrics.

They were so excited
It was coming to be
Two people so in love
And now soon it would be three
For many years they planned it
Now it would soon be true
She was picking out the pink clothes
He was looking at the blue
The call came unexpected
The doctor had bad news
Some tests came back
And things weren't right
He said you're going to have to choose
I'll wait a week for your decision
And the words cut like a knife
I'm sure everyone will understand
If you choose to end its life
Though they were badly shaken
They just had no choice
Cause they knew God creates no accidents
And they were sure they heard His voice saying
Sometimes miracles hide
And God will wrap some blessings in disguise
You may have to wait this lifetime
To see the reasons with your eyes
Cause sometimes miracles hide
It seemed before they knew it
The appointed day arrived
WIth eager apprehension they could barely hold inside
The first time they laid eyes on her confirmed the
doctor's fears
But they held onto God's promise
As they were sure they both could hear
That sometimes miracles hide
And God will wrap some blessings in disguise
You may have to wait this lifetime
To see the reasons with your eyes
Cause sometimes miracles hide
Though she was not like the other girls
They thought she was the best
And through all the years of struggles
Neither whispered one regret
And the first day that she started school
And took her first bus ride
They remembered the words that God had spoke
And they both broke down and cried
You see to them it did not matter
Why some things in life take place
Cause they just knew the joy they felt
When they look into her face
They learned
Sometimes miracles hide
They said God has wrapped out blessing in disguise
We may have to wait this lifetime
To see the reasons with our eyes
We know sometimes miracles hide
We learned sometimes miracles hide
Take care and God bless everyone,"

Wendalyn (university student, Nebraska, Omaha USA)

**75. "FROM ME: "this response is written in response to 67."

"FiveKmom wrote:
This is a life-altering situation: very much like the t.v. commercial depicting alcoholism as a wrecking ball in the lives of those involved with the alcoholic-- that's exactly what raising a significantly disabled child is like for the parents,.... The author makes a point, probably valid, relative to "the foolish and heartless state, country, and society I live in." She goes too far to make it.

My wife, Jan and I, grew up in homes wrecked by the most severe forms of parental alcoholism. We've raised, and are raising, a significantly disabled child or two, or maybe five.

If I am to stay with the wrecking ball analogy I will claim that in the former cause, the ball destroys decency, in the latter, if in play at all, it destroys indecency. That is to say, excess selfishness, excess pride, the idea that our lives and hours exist solely for our edification, etc.

Everyone on this list, including FiveKmom, knows that to touch -- truly touch -- the life of a severely disabled child is a privilege and a wonder. To accept their frailty is to accept our own. The frailty of the body human cannot be forestalled indefinitely. It will express itself, perhaps in the last ten seconds of life, perhaps the last ten years, perhaps earlier and longer. Perhaps ten seconds can be more agony for one than ten years for another?

The abortion comment (as attributed by FiveKmom) and Mom's own comment flow from no good cause other than fear of the unknown. That fear is aggravated by the presence of a unique child; unique because s/he will stare down (and tear down as if a wrecking ball) any pretense that much can be known about his or her life and destiny.

I hope I haven't brought shame on myself or anyone else with my ranting. I just cannot allow thought of alcoholism's destruction to lay down beside disability's wonder.
Best regards, "

Kevin C. Murphy, Ph.D.
(President, TACK-TILES(R)
Braille Systems LLC

**76. FROM me: "this is in response to #75."

"FiveKMom@aol.com wrote: Kevin, you are truly a "saint" and I can't compete with that. BUT the "wonder" of disability, though there are moments like you describe, has also
been responsible for a number of limitations in our lives that are less than
"wonderful, the primary one being that it takes one full-time adult who
doesn't work to engage in the daily struggle of getting our son a very
mediocre education via hassling the schools daily, hiring ed. therapists,
ot's, pt's, etc. and finding "regular" professionals like piano teachers,
swim instructors, track coaches, computer teachers, etc. who will take on the
challenge of a blind child. AND there are so many things (like ALL the real
life skills) that no one teaches-- you can't hire it, even if you could
afford it-- which you can't-- that you have to teach the child
yourself--adding up to more than a full-time job for any one adult. Not being
a saint, I have to admit that I resent the fact that I have no life of my
own-- if I had known it was going to be this way, I would never have wasted
three years in law school and knocked myself out passing the bar and signing
up to be one of the first female civil trial lawyers in my part of the
country-- instead I would have majored in child development and gotten a VH
teacher degree. Actually, I wouldn't have married my husband-- our genes were
not compatible and we both wanted kids-- of course there was no gene mapping
then, and we had no idea we were not well matched. Disability is "wonderful
all right: I lie awake many nights wondering what is to become of my Jim
since he's not getting what he needs educationally-- what could or should I
have done in the past that I didn't do-- why are there so many stark raving
idiots at his school, like the vice-principal who spent 30 minutes hassling
me because I forgot to get a visitor's pass to go on campus to the track,
while the back gate stood open, as it always does, the entire last period of
the day and any child molester or maniac could've walked through and he
wouldn't know it because the vice principal doesn't know who THEY are, he
only knows who I am so he only insists that I (whom he knows isn't a security
risk for Pete's sake) have a visitor's pass. Yet this idiot was too busy to
look into getting my son science credits for attending Space Camp. And this
is only one of the morons I deal with daily over there. Need I go on? Oh yes,
disability is "wonderful-- I spend my whole life "wondering how I'm going
to get through another day and when it will all be over and done with, which
of course is never-- at least not in this lifetime."

FiveKMom (AERnet)

FROM ME: "Having a child with special needs can mean extra work, expense, stress can it not? The next question I have is, what are those things that some parents have that make it work so well for them? Like Kevin who is referred to in this response?"

**77. FROM ME: "This is in response to #76."

"Dear FiveKmom,
There's been no opportunity to mention or inquire as to how old your son
is.

When, long ago, you woke from life's dream, you awoke on a battlefield. I
was there. I had been in that thick of battle for, perhaps a quarter of a
century. Now, that might qualify as stupidity, incompetence, but it is no
indication of sainthood.
I wonder a lot. Not all my objects of wonder qualify as wonderful. I have
to "wonder" if you recognize the wisdom that resonates through your very
articulate response. It worries me a bit that these exchanges are not
off-list. I will give your wisdom precedence over my own.
You wrote, "Oh yes, disability is "wonderful-- I spend my whole life
"wondering how I'm going to get through another day and when it will all
be over and done with, which of course is never-- at least not in this
lifetime."

Two of my disabled children are in their graves. You, very obviously,
learned a lot when you mothered your child. I learned a lot when I buried
mine. I hope you can absorb some of my learning by proxy, because I do NOT
recommend the course I signed up for.
"We husband powerful self deceptive ideas in our society. One is tagged,
"The living will." In other cases, people go into hospitals ordering that
"no extraordinary measures be taken if...," False heroes and heroines cry
out, " I don't want to be a burden!" There is a poignant irony behind this
counter-heroism. I do not mean to exclude exceptions. Honest causes can
sire these ideas. Very seldom is that the case.

Any might watch me wash the body of my child, or an elderly friend or
relative. The first impulse, would be to conclude: Kevin is bestowing a
gift to the person he washes. The truth is that Kevin is taking a gift from
the person he washes. The ideas in the paragraph above are simply witness
to the value of the gift and the unbearable cost to the giver.

"Over and done with," leaves an emptiness more painful than you (I pray)
will ever know. That emptiness is scaled in proportion to the gifts, I've
taken. That denial of the privilege to assist, believe it or not, is the
most painful cut. Now, that's not sainthood. That's years in the trenches.
You will catch up.
"To be or not to be. That is the question. Whether 'tis nobler in the mind
to suffer the slings and arrows of outrageous fortune...,". That's a real
question I have answered and you have yet to answer.
More lines: Mom, you are wounded, not yet slain. Lay you down and bleed
awhile, and then you'll fight again.

From your message, I believe you are, in your own wisdom, letting yourself
bleed. It seems even to be the nature of the message. For heaven's sake,
lay down."

Kevin C. Murphy, Ph.D. (AERnet)

**78. FROM ME: "Another message referencing fiveKmom."

"Please, please don't let anyone put you on a guilt-trip. Even though we may be TVI's or other professionals who work with
children who have disabilities, we won't ever truly understand your life unless we walk in your shoes. I for one appreciate
your honesty in dealing with real life. It takes a big person to do this. I don't know what to say, except that I support
you 100% and am so thankful for parents/TVI's, and others such as yourself who have attempted to move mountains for their
children and students. I know that life throws curve balls, but in my heart I have to believe that all things happen for
a reason. Let me know when the march begins--I'll be there!"

Pam Zipperer (AERnet)

**79. ">...It worries me a bit that these exchanges are not
>off-list....
Kevin,
You questioned why this message exchange should take place on the list. I
for one think that it is so appropriate to share that all here may remember
the importance in our own personal lives of each and every child that passes
through our lives and the impact that is had on everyone whether it be
child, parent, teacher, or other professional.
Thank you all for the personal insights you are sharing with all that we all
might learn a valuable lesson in life."

Joann Mother of Marian age 12

**80. I would like to respond to the current discussion. I am a father of a
totally blind 17-year-old daughter. Katie is such a gift! She weighed
one pound nine ounces at 24 weeks. This is child who has so far
beaten the odds. She jumped from sixth grade to ninth grade (in the
public school) and has made the honor role each quarter. She is
extremely gifted in computers, music, and Spanish. She uses both the
regular computer and the Braille-N-Speak 2000 for internet access and
Spanish. She wrote her own manual for the Franklin Spanish Master
which is not blind friendly. Katie has been featured at two national
conferences, Closing the Gap - Minnesota, and another.
At the same time my wife, Genney, and I have had to advocate nearly
on a daily basis for teachers, services and equipment from the public
schools. Due process, yes. One case, two years! Very, very painful!
Also, Katie has had twenty surgeries, has a chest tube for I.V.
therapy - migranes - once per month administered at home by mom. Six
years of constant headaches. Katie is working on completing high
school at home through Hadley School for the Blind, Illinois.

We have recently started the Alabama Association for Parents of the
Visually Impaired. What a great group of families!!! Also, years ago,
we started the Minnesota Association for Parents of the Visually
Impaired and I served on the National Association for Parents of the
Visually Impaired. I also worked at the Minnesota Academy for the
Blind.

Taking the lemon and making lemonade, I went back to school three
and a half years ago and am a certified orientation and mobility
specialist. I love it!!!

I could write books as to how blindness has affected our family of
five. Love is the cornerstone to work through all the obstacles. The
best teachers my children have had loved them and loved teaching! I
really appreciate these teachers, true friends, and I try to love my
clients each and every day.

One other point, prayer is so important. I need this to be a better
husband, father and teacher.

Lastly, as parents, we need to "assist" our children in learning new
things. If we "help" them, we tend to do it for them and they don't
learn. It takes more time and patience to "assist", but the outcome
is independence.
Blessings,”

Jerry Lynch (Alabama USA)

**81. “Great thought provoker and a very unsettling one.
I just started reading a book "The Immortal", which my pastor would cringe
if he heard that. I like to look at all angles and sides of a subject
matter, including the hereafter. I would suggest you may want to read this
book.

Anyway, I am of a (Christian) "Spiritual" opinion on the matter and believe
that there is a reason for everything. I was born a "Little Person", I am
now 4'4" tall. It may not seem a problem for most of you, but it was very
difficult being a kid that was different from the rest. I did overcome
this, thanks to my parents positive attitude. They did not over protect me
and prevent me from doing things...so I did just about everything everyone
else did. Things are just a little more difficult to do, I have to take
extra steps to accomplish most things. So now I have RP and am losing my
vision. I approach it like everything else....with a positive attitude. I
believe we make choices each day. We can wake up and say "I am going to be
a unhappy, miserable SOB, or I am going to enjoy what I can in life
today...find the positive. I feel blessed that God has been with me my
entire journey and will be there when this life is over "Well done good and
faithful servant". NOBODY is promised perfection in a child or in their
life. There have been trials and tribulations throughout time....we are no
different. It is how we handle them that is different. I would think that
the author of #69 has no friends or relatives who care.....I hear a
desperate cry. We all need love and companionship of others and we cannot
survive without it. I would hope this person reaches out to someone close
and releases the emotions in a healthy way. I am not saying I don't get
frustrated someday and say "What is the use"? It is normal to feel that way
when faced with such a large obstacle. The important thing is how we deal
(Or NOT deal) with it.

OK...so I am babbling here...it's 4:30am, I got a bad cold, can't sleep and
so here I am. I think I better go back to bed! Thanks all for listening!”
"Peace be with you all".

Joyce Cass Pratt (USA)

**82. “ and see what kind of life we have >>

The point, Robert, is that most blind people do not have this kind of
attitude. The lady who wrote this has access to a computer. She may be
blind, but living in America, she has a higher lifestyle than most average
people in many other countries. I am happy to say her attitude is not the
usual. Today I attended a chapter meeting (NFB) at which two of our members
announced their engagement. Two of our members brought both their (blind)
children. Others brought both blind and sighted children. One member told
me he doesn't like visiting groups of sighted people because he believes they
are all looking at him and he can't look back. (we discussed paranoia. He
does understand the problem)

Although some of our members waited years to get their jobs, and many more
years to be able to get married, not one of them regrets existing. Not one
has said to me, thank God my mother was raped and strangled.
Maybe the hand of God doesn't reach down from the clouds with a silver lining
on a golden platter, but God has certainly put his presence in all our lives.
I came online today because I'm part of a group studying (this month) a
chapter in the Search For God book called "In his Presence." Our discipline
this week was to point out God's presence in our lives to others, and I hope
it is possible to do that today.”

Lori Stayer (Merrick, New York USA)

**83. I was waiting for an article on this subject to insert in your provoker. To
bring to light. Just how true this could be. As I noted in the last
provoker I would look at the fear of gaining one's sight back. Then having
to lose it again. Yet, in reading below, I really believe I would take the
chance at the promise of being able to see again. Don't get me wrong here,
I have adjusted well to blindness! The little things that you miss after
having one's eyesight like I had. If the operation was pronounced to be
worth the undertaking on a positive spot. Then yes I would take that
opportunity!!

Here you can read from information that was past out on the web sight in
behalf of Steve wonder, the singer. Who volunteered himself to test the
chip. Thank you for letting me insert this important information.
Blind people with eye damage may someday use computer chips to see.
Electronic retinal implants are not the bionic eyes of science fiction, the
sort that Star Trek had, but they are getting closer. Work on these
implants,
which would be among the first marriages of computers and neurons, is
progressing fast, researcher say, partly because of the increasing power of
the computer chip. Such implants may start giving blind patients limited
vision within a decade.
These retina implants are third and fourth generation computer chips that
can
electronically stimulate the retina says a professor at Wilmer Eye
Institute
at John Hopkins University. We feel confident that we will have a prototype
for human use not in ten or twenty years but in less than five. There are
two
teams working on prototypes, one in United States and one in Germany. At
least three start up companies have also formed to develop the new implants.
The surviving neural tissue in the eyes of blind patients can respond to
electrical stimulation. When the retinas of blind patients were stimulated
by hand held electrodes, the patients reported that they could see points of
light, dim outlines, and shapes of letters. These electrodes were the
precursors of the tiny silicon chips that doctors hope to implant in the
future.
This seeing points of light, shapes, or letters is encouraging. Doctors
don't
expect to replicate the complexities of natural vision. Simply providing
mobility type vision or the ability to distinguish between light and dark,
to
patients who are completely blind, will have far reaching consequences.
Being
able to see the outline of a person or doorway makes a different world that
the world of total darkness.
This new chip will work by electrically stimulating the millions of neurons
in
the retina, a thin layer of light receptors and other neurons, in the back
of
the eye. The chip that stimulates the nerves will be placed either near the
retinal layer where nerve impulses are sent to the brain, a method being
developed by John Hopkins University, a group at the Massachusetts Institute
of Technology, and Harvard. Or the chip will be placed close to the front
line light detecting cells, the rod and cones, which is a method being
developed by another company in the United States.
Some patients are blind because of light sensing cells are degenerated or
dead. But the rest of the retina is made of neurons that are relatively
intact. The main idea of the several teams in the field and companies is to
jump-start these other retinal neurons that are waiting in the dark. The
chips are designed to help the 30 millions people world wide who suffer from
two diseases of the retina. These are macular degeneration and retinitis
pigmentosa. Even when the rods and cones of the eye degenerate or died, the
cells that communicate with the brain still live in substantial numbers and
apparently still work.
Doctor emphasize that the chips being developed are for degenerative
diseases
of the retina and not for damage to the optic nerve or brain. An example is
the chips would not be good for Glaucoma in which there is damage to the
optic nerve.
Thank you”

GeneStone (Portland (ME (USA)

geno@maine.rr.com)

FROM ME: "Gene provides us with one of a series of medical and science articles presenting work in progress on gaining vision. I am sure more and more of them will come at us over time. I'll also bet they'll become more complex, revieling of new wonders, successess. But there will be room for improvement for a long time. So sure we'll read them, monitor the happenings, always with an eye to informed choice."

**84. FROM ME: "This one also refers to #69."

"I am thankful that all blind are not so negative or I would really have
trouble when i do get down! We need to be possitive if we are to be any
good to anyone else, let alone to us!"

Ernie (Walla Walla, Washington USA)

**84. "Dear Sylvia,

I read your post on Robert's thought-provoker and I found it all to be a
great big lie. After reading it, I can come to only one of two
conclusions:

1. You don't believe what you are saying and are just trying to stir
things up.

2. You really do believe all of your rhetoric and that would make you a
very sorry individual indeed. In either case, whether you believe them or
not, your words are extremely distorted and untrue. I stand before
you...a living, breathing example of the untruths to which you cling so
desperately. I am a 25-year-old, totally blind, perfectly happy blind
person who is not saving up pills or rushing out to buy a gun. I am
developing a strong faith in God and in the love of life itself. I once
thought as you do now, but I grew up. I realized how self-defeating that
point of view is and got past it. I hope you will do the same. I do plan
to marry at some point and have kids, regardless of whether they might be
sighted or blind. I'm sure you probably don't have any scientific
evidence to support the idea that blind parents are more likely to have a
blind child than sighted parents are, so we won't argue that point. Both
of my parents were perfectly healthy, sighted people. Both of my brothers
are sighted as well. Many blind couples I know have born and raised
sighted kids. Also, I work full time at a telephone market research
organization and I make $11.50 an hour. I have my own apartment with no
roommates and I have crossed many a street unscathed, perfectly confident
in my abilities as a skilled traveler.
I have now disproved almost all of your claims in your post to
thought-provoker. If you think I am the exception to the rule, you are
gravely mistaken. There are thousands of blind people who live just like
I do...perfectly content with their lives as blind people. I hope someday
you discover the truth about blindness. If you choose not to, please know
that it is your own choice and don't blame the world around you for your
pain and misery.
Yours truly,”

RyanO (Lincoln, Nebraska USA)

FROM ME: “Ryan’s message, if you were to boil it down into one word, what would it be?"

**85. "Let me guess its a girl!
I plan to have kids and I will still love them the same if they can see or not."

Mike Mello (NABS/NFB)

**86. This is quite a hair-raising thought provoker for me, as I have often been asked whether I would have an abortion upon finding out that my baby was
blind or had another disability. My husband, John, and I have also often been told how unfair it would be for us to have children because I'm blind and
he has a spinal cord injury (due to being beat up by some street gang members). To sum it all up, no, I don't agree with abortion. Though I believe that
everyone has the right to choose for or against abortion, I won't have it. Okay, as some have pointed out in their responses, I have a selfish attitude.
However, though genetics may say that I'm more likely to pass on my hereditary blindness and John is more than likely to pass on his hereditary diabetes,
the outcome of the baby may not be diabetic or blind. Sure, those things can develop later in life, but that's no excuse for us not to have children.
Sure, there is the option of genetic alteration. We don't have the money for such, but, even if we did, the idea of genetic alteration scares me. For
one thing, who's to say that there would be more complications or other negative developments upon genetic alteration
Regardless of whether any of these things develop during pregnancy or later in life, babies are just as much as human beings as we are. There's a reason
for why God does what he does, and we should not refute him. I'm not saying, of course, that I never doubt God because I sometimes do, but I always come
back in a better frame of mind with this belief. God made genetics as he made them, and I don't believe that they should be tampered with. For one thing,
if all expecting parents had abortions upon learning that they were more than likely to give birth to a disabled child, there would not be as many blind
and disabled people on this earth. The only ones existing would be those who developed their disabilities later in life, and they would either be institutionalized
or outright killed. Even if neither one of those drastic things happened, the few blind and disabled would have had to push a lot harder to get the laws
and rights for disabled people that we have today. In short, those of us who could have been aborted upon learning of our disability would not have been
able to share the gifts and inspiration that we have shared with our community and society. I'm not saying of course, that our fight for equality is through,
but we have made a lot of progress--assistive computer technology, blind people as lawyers and advocates, etc.
Some have also brought up the fact that couples should look ahead into the possibilities of that child's future--social implications, how he/she will
be treated by the community or other family members, etc.--if he/she is born disabled or is likely to develop the disability later in life. While I understand
such a point (and they're valid and well-respected), I also look at the fact that things may not get as bad as we foresee. Only God knows those answers;
thus, we cannot always make assumptions or predictions of the future. I'm not saying, though, that the thought of our child's future has not crossed mine
and John's minds if we were to have children because it has. We have thought of the possibility of having disabled children and how cruel kids and adults
can be to disabled people. We have also thought of the fact that we're dark-skinned minorities--I as an Asian and John as a Black Native-American--and
how the community we live in is not very open to the few minorities already here where we live. Being that the community is already not open as we wish
it to be, any children we have will suffer racial taunts as well. If the child is disabled to boot, then they would have disability and race to contend
with in how they are treated or lack their of. In short, we have discussed the reality of what could happen, but we know that we could provide the love,
affection, support, encouragement, and all the other things that make up a positive environment. While everyone else out there may treat our child like
a freaky animal, he/she will always know that they have a home that they live in where there's love, consolation, shoulders to cry on, etc. No, I don't
wish to give birth to children who will suffer, but I won't give having a children a try. As I previously mentioned, only God knows what will happen,
and that's probably why we don't have children yet after seven years of being together. What we know as reality is not what God wants for our children
or for us to see; thus no children.
A few responses have brought up the possibility of adoption and how hard it is for blind and disabled people to successfully adopt. I personally knew
a couple who successfully adopted a partially blind child from Korea. Now, whether they adopted this child by choice or they were relegated to adopting
this child, I don't know. All I know is that, regardless of whether I was relegated to adopting a disabled child or had my choice, I would adopt whichever
was available; it would not matter what race the child was either.
In linking the possibility of giving birth to a disabled child to adoption. Not only do parents who want to adopt hope to adopt a very healthy child,
but they never know until they are confronted with the question through referrals whether they would adopt a disabled one or not. I say this because such
was the case with my adopted parents. When they found out that she was infertile, they considered adoption. It wasn't until they received my name and
picture that they had even considered adopting a blind child. I was about seven years old when they learned about me. As to whether they had planned
to adopt an infant instead, I don't know, but I can only suppose that that was their first consideration. Anyway, upon choosing to adopt me, they were
told that I was blind. As time progressed once I arrived here to the States, though, they not only learned that I was not just legally blind, as stated
in the files at the adoption agency, but that I needed Braille equipment and materials as opposed to large print. They also learned that my right eye
never developed; thus, the need for a prosthesis. Along with all that was learning that I had issues of trust after being shoved from foster home to foster
home. In short, my adopted parents were not prepared to fight the public school system to accept me under the new laws of mainstreaming disabled children
(1978 was when all this occurred). Nor were they prepared to have to fight for accommodations to be made yet be included in the regular school curriculum.
About five years after I came here to the States, I overheard my adopted mother comment to my step dad how she wished that she'd never adopted me and that
she wished she could send me back. She does not know that I know any of this, as I had already gone to bed when she made this comment. Needless to say,
that hurt me deep. It made me think later in life about my blind friends telling me that their parents could not answer whether or not they would have
had an abortion if they knew that their child (my friends) were blind. Concluding by their parents' undefined answers, the conclusion was that they would
have been aborted. In relation to me and discussions like this with my friends, I also began to feel that I should have never been adopted; I would never
have heard the kind of hurtful comment my adopted mother made.
In conclusion, whether a couple is thinking about future biological children or adopting, I think that the same hopes for a healthy child are equal.
I also think that the regretful thoughts about giving birth or adopting a disabled child also occur because they did not have the wherewithal or strength
they thought they had to carry on the challenges of parenting any kind of child regardless that he/she is disabled or not. In short, whether a couple
is going the biological or adoption route, the couple has to be ready and have the wherewithal. Of course, in some cases, the wherewithal that a couple
thought they had in the beginning was not enough for the challenges they are encountering, which is unfortunate to the child and the whole family regardless
of whether the child is disabled or not.

Linda USA