THOUGHT PROVOKER 12

Deaf Or Blind

     The bus stop this evening was moderately peopled. Some sat within the shelter others on the outside benches. A young woman carrying an attache case and arcing a long white cane joined the homeward bound workers.

     Rising from the seating within the shelter a similarly attired young woman made her way to where the new comer had positioned herself at the end of the line of benches. Thrusting her hand into the blind woman's, she signed, "What are you doing here catching the bus?"

     "Mary!" The blind woman signed back, "Jack had to take the kids to dance. I'm on my way to meet up with them. How are Bill and Jan?"

     "Fine. Bet they will be even happier when I get home and suggest we all go out to dinner. Work today was tough."

     "Sounds like a plan. My work today was good." Hesitating, then going on, "Don't look now, but the ladies seated next to us are talking about the deaf and blind women.

     "Not again. Not sure if I'll laugh or cry, but what this time?"

     The first by-stander said, "Look at that!"

     Second person, "Poor soles."

     First person, "How do they do that?"

     "Should we really give them a show?" Asked the deaf woman.

     "Like a wild raunchy story?" Picked up the blind woman. "Oh wait... Oh no! The one just asked the other one the big question!"

     "Oh no! Not that one?"

     "Yes, what would you rather be... deaf or blind?"

     "Well you and I have discussed that between the to of us. I used to think it was such an appalling question.
Remember what it was we decided?"

RESPONSES
e-mail responses to newmanrl@cox.net

**1. "The last couple of Provokers touched on dreaming…
Some time after I went blind (after more than twenty years of
excellent eyesight), I began dreaming that I was carrying a white
cane everywhere... even though I could fully see in these dreams! Sometimes
this felt natural, but more of the time I felt like I was
_pretending_ to be blind, trying to _appear_ to be blind to others
while it was obvious to _me_ that I could see.

Lauren Merryfield spoke so "clearly" about dreams in the most
recent provoker (which I received this evening)... this afternoon
I woke from a dream in which I was "deliciously" and deliberately
looking at and watching and even touching colorful flowers I'd
never seen before... a dazzling and colorful mother snake wriggling
through the garden followed by her baby snake... the colorful
dollar bills (fives, tens, twenties) in my wallet…

After I had been awake and thinking about it for a time, I realized
that it was the first dream I'd had since I was blind in which I
was not thinking about blindness, or a white cane... I was _fully_
involved in seeing the world!

Re the new provoker: about choosing whether I'd rather be blind or deaf (if I were given the choice)... well, I'm comfortable being
blind _now_... and I love music, sounds, people's voice tones. I'd
probably say some equivalent if I was deaf... I love colors,
people's faces, reading print material, the sparkling night sky and
all of its colorful mysteries.

I've asked a few people who had different disabilities (none of
them deaf if I remember correctly). they all said they would
rather be dealing with the disability they were already dealing
with. "Better the devil you know than the one you don't" comes to
mind."

David R. SkY (Vancouver, British Columbia, Canada
sky@paralynx.com

(+1) (604) 687-6898(

**2. "I think it is a terrible thing for anybody to have any kind of disability.
A person should not focus on what is wrong with them. They all should be
happy to be alive and able to be with the one they love. A person that
looks at a person and only sees there disability is more disturbed than
they know. It is not what a person looks like or how they act to get
along. Everybody needs a hand up some time in life and it should not
matter who they are or what problems."

Tim olmstead (Fremont, Nebraska, USA, littleoz@juno.com

**3. "Oh gee, Robert, this is an easy one. NEITHER!
How many of us are given the choice? We just operate with what we have,
right? Some people are so dumb.
Sigh."

Lori Stayer (Merrick, New York, USA)

**4. "I too have always seen this question of "What would you rather be, deaf or blind" a ridiculous thought. I know what people are getting at, which is "What loss would you better withstand and live with?" Nevertheless it has always rankled. I used to liken this question to "What would you rather be, a man or woman?" But alas, I don't think my homegrown question really gets at what the first one is about, a disability. However, I find Robert's Thought Provoker does have merit for us when looking to the larger question of over all human potential (Robert has used this phrase elsewhere).

Question yourself, "What makes you happiest during the day, things you see to do or things you hear to do?" "Where does your life's essence lie, within those life's activities which require sight to perform (really think about this one, do they really require sight) or activities requiring hearing (think about this one too, can you do them minus hearing)?" "What about your life's goals? Do they require sight or hearing to achieve them? Are their alternatives which allow you to achieve them; even if it means taking an alternative route to get there?" "Then finally (for now in this discussion) what if either disability requires you to change your goals, change your career, change your hobbies, change your methods for daily living, change your view of yourself (would this really do it to you down to the core) and/or change your view of the world; can you still be happy?"… We could go for screen after screen with questions and I think this is what the original question is asking. Answer them and you'll have your answer, right?"

Marvin Orkel (Paris, Texas, USA)

**5. "I'd also like to look at the question of, "Why would someone even think about asking such a question?"

Mike Jones NE

**6. "Wow, that was an intriguing story. It brings up a very interesting question
as well. As a person who is blind I know from personal experience that it
is not a terrible thing to have to deal with. Of course I have been blind
for as long as I can remember so I have always done things the way I do them
now. No difficult adjustment period took place.

However; I have no experience with not being able to hear and can't even
imagine what it would take to deal with this on a daily basis. Does that
mean it appalls me to even consider not being able to hear? Not really.
There are many deaf people that I've met and none of them seem terribly
unhappy or act as if they've been burdened with something that is
unbearable. I still don't claim to know how they feel or know what it takes
for them to get along in a world that is so geared for audio stimulation.

I will say this though. Being either deaf or blind does not scare me. It
is the prospect of being both deaf and blind that frightens me. For anyone
who is deaf and blind and who may be reading this please forgive me. I'm
sure that I sound silly. However, since I am so dependent on my hearing for
just about everything the thought of losing it terrifies me. Again this is
speaking from a total lack of experience on my part. A person who is both
blind and deaf may feel the same way I do about being only blind.

So there it is, for what it's worth."

Wendy McCurley "Wendy.McCurley@CWIX.com )

**7. "I don't really have much choice, as I have Ushers!"

George Meikle

**8. "I believe that the response to this question comes from one's experience.
If the question were posed to a sighted person who had never experienced
either blindness or deafness, it probably would be an extremely difficult
question. However, as a blind person who has had normal hearing all my
life, I believe that my life would be greatly diminished if I could not
hear. I've learned to live a fulfilling life as a blind person. I'm sure
that deaf people do the same, but it seems that there would be a lot more
issues which would be much more difficult to overcome as a deaf person."

Cynthia Handel

**9. "Having gotten used to the idea that I may go blind, I've decided that I'd
rather, if they were they only alternatives, be blind than deaf. I can't
imagine a life without sound but I think I could cope with a life without
vision.

I suppose it really depends on the individual; anyhow that's my Two Penny
worth."

Les Allan (Rplist, Halifax, West Yorkshire, England)

**10. " I have a cousin who was born deaf. I believe (mostly because of her) that
hearing impairment is much easier to overcome (or at least possible to
overcome) than vision loss.

She learned to read lips, and although her speech is sometimes difficult to
understand, most of the time most people can understand her. She's quite
patient with people who cannot understand her, and I think people are
generally patient with her (of course). She really an amazing person. She
was a baton-twirler in high school (a regular public school) and learned to
tap dance by feeling the vibrations of the music on the floor. She even
performed on TV a few times back in the 60's and also performed on the Steel
Pier in Atlantic City.

Don't get me wrong... I'd miss the sweet voices of my twin sons, but I'd
miss more seeing their beautiful faces growing up (they're 11 months old) J"

William D. Hileman, DASI, Inc.
(Rplist, dasibill@gator.net )

**11. "I appreciate William's account of his cousin. That is wonderful. I also
looked at the thought provoker as if I were losing my hearing gradually as I
am my sight. I still think losing sight would be more difficult. Though it
was pointed out that as you lose hearing, you lose people. But if it were
gradual, I don't think I'd lose many people. I have well established
relationships and e-mail has opened up more new relationships. That would
not be lost w/ loss of hearing. And by losing it gradually, you could learn
to read lips and you would be able to speak coherently.

I also can't imagine not "seeing" my little ones grow up. I am already
scared of all I'll miss as my sight worsens and they grow. They are 2 and
4, and lately as the younger has hit the terrible two's, I often wish I
couldn't hear her! Ok, bad joke. Of course there are many times I wish I
couldn't smell, either!

I still feel losing sight is worse than losing hearing. But I am grateful
my sight is being lost gradually rather than at birth or all at once. Those
are even greater challenges."

Mark Turley (Rplist)

**12. "My first thought was to agree with Mark and William and say that being deaf
would be easier. Thinking a little longer, I realized losing sight means a
loss of mobility and things, while losing ones hearing means a loss of
communication and people. In the long run I would much rather not see someone then give up the ability to communicate with them. (Yes, there is
signing but how many people are you going to meet up with that have this
skill)"

Linda (>lmg@bendnet.com )

**13. "I second Linda. Having been born with some hearing loss (Usher's
Syndrome), I find it now with increasing vision loss that almost everything
is much more difficult. Also, not being able to see, even when the hearing
is decent, could be very stressful in many situations. Example, a strange
person approaches. How do you read body language? And if he is a
potential danger, how do you assess your surroundings to plan an escape or
whatever?
I think I'd opt to have my vision back to normal. I do remember how it
used to be, when a kid, it was normal. Where I never had normal hearing, I
can't really appreciate that. Sigh. Am a has-been music lover. "

Robert Clark (Rplist, Newport, Oregon, USA,
www.netbridge.net/rclark
rclark@netbridge.net )

**14. "I agree with Mark entirely... I'd gladly give up my hearing for good
eyesight."

Bill Hileman, DASI, Inc.
(Rplist, dasibill@gator.net )

**15. "Deaf or Blind? Being a "the grass is always greener" type person, I would
say I'd rather be deaf. I could do so many of the things I can't do now,
like play sports well, drive day and night, read books, find lost items,
etc. Of course I don't immediately know the things I would miss w/o
hearing, like music, audio conversation, movies, etc. However, I am sure
it would pain me more to not be able to see my daughters than to not be able to hear them.

One thing I am definitely convinced of, though, is I'd rather be
low-hearing
and normally sighted than low-sighted w/ normal hearing. I think
accommodating a low-hearing lifestyle would be much easier than a
low-vision
lifestyle. I know if I was low-hearing, I wouldn't even be thinking about
a possible early retirement.

That's my take"

Mark Turley (Rplist, BTW, I think I'd rather be deaf or blind than be so rude as to sit around
and stare and talk disparagingly about disabled persons.)

**16. "I remember reading that Helen Keller was asked that if she could have either
her sight or her hearing restored, which would she choose? She chose
hearing. I don't recall her reasoning why, and I also wonder why she would
think hearing would be better, since I believe she was born both deaf and
blind, and therefore would not know what either one was like…

I agree with Mark entirely... I'd gladly give up my hearing for good
eyesight."

William D. Hileman, DASI, Inc.
(Rplist, dasibill@gator.net )

**17. "With regard to "thought-provoker: Helen Keller chose hearing because when you are blind you lose "things"
but when you are deaf you lose people.

Make sense now?"

Dorothy Stiefel (Rplist)

**18. "My first thought was the quote Dorothy shared: "Helen Keller
chose hearing because when you are blind you lose "things"
but when you are deaf you lose people." There is some
wisdom in that, but I would add my own spin. I think for me
it would depend on where one stood in the life cycle. When
I was 20 the isolation from deafness would have been the
greater deprivation. But at my age I enjoy quiet. Most of
what I hear these days is noise and the ugly din of human
contentiousness, but I really wish I could see well again.
Perhaps I spent too much time in Washington. Anyway, if God
offers the trade, I'll take it."

Tom McDonald (Rplist, e-mail: mcdonald@one.net )

**19. "Tom really hit on it. Life today IS so full of stress and contentiosness
and stuff that some of us just want to retire to some quiet hole in
the ground and relax.
Just watch the news, the live cams of the freeway traffic. Geez! Do I
want to be in that mess? Nope. Just watching that makes meress out!
I think us humans have really gone too far.
Well, I am not going to write a novel. In spite of this life style and my
limitations, I find joy in life. And I find the strength to keep going,
thanks to people such as you all on this list. But you already know this
because you are here, sharing, supporting. Pretty cool."

Robert Clark (Rplist, Newport, Oregon, USA,
www.netbridge.net/rclark )
rclark@netbridge.net )

**20. "I, for one, am aware that you in fact lose people when you lose eyesight.
You would have to be blind from birth, as H.K. was, and /or have a highly
developed self-protective talent for rationalization, not to know this and
willingly acknowledge it."

Joel Deutsch (Rplist)

**21. "It is documented , statistically, that loss of vision is the disability
feared by more people than any other, and for such fundamental reasons,
bearing on the way we comprehend the world and orient ourselves in it, that
the question seems frivolous and even somewhat cruel., though inadvertently
so, I'm sure. As I watched, in my days of movie theater-going, "Children Of
A Lesser God," and sat through the scene where the man, William Hurt,
uselessly tries to share the heart-rendingly beautiful middle movement of
the Bach double Violin Concerto with his deaf lover, Marlee Matlin, I wept
with despairing empathy. But I understand full well that, given a
miraculous, unlikely choice to make, I'd retain my sight in a heartbeat's
decision and be content to mourn the loss of sound for the rest of my life
as, it is known, would most other human beings."

Joel Deutsch (Rplist)

**22. "You can't document statistically an opinion of people who are deciding
between two things, both of which, many of them have no experience of.

Its like saying to a person: Would you rather be a cat or a dog?

Most people can see and hear, and don't know what it is like to be without
either of the senses.

The only people who truly know, are those who could once see and hear, and
now can no longer do so."

Cheers, Tim Culhan (Rplist)

**23. " Dear Tim, and List, Assuming that Tim's objection was provoked by my post, let me repeat and rephrase in the hopes of clarity, as the initial statement in my post does
not offer itself to debate, but is simply a statement of fact, used to
introduce and underscore my personal opinion following.

Again: Though I am not able, without research, to identify the sources, it
is my confident recollection that well-publicized data derived from polls
and questionnaires regarding peoples' worst fears about the hypothetical
prospect of disability have clearly indicated that, by a large margin, it is
the idea of becoming blind that strikes the most fear and dread into people
after which the threat of any other loss, sensory or otherwise, ranks
behind. It is not useful to argue that people should or should not feel
this way, lacking actual experience, any more than it is useful to object to
a poll in which respondents express their willingness to vote for one or
another candidate for public office, not yet having experienced the results
of such a choice, were it to become political reality.

How different people react to various disabilities that actually befall them
is another matter, completely outside the scope of any statement I made in
that post, except for the expression of my own feelings drawn on personal
experience, about my own sight loss.

Hope this helps."

JoelDeutsch (Rplist)

**24. "As a declared deafblind with very poor vision and sight of course, I would say that being deaf is the "easiest" handicap. You can communicate, get around, read and all that stuff. Blindness would severe your possibilities to live a "normal" live much more. There are a lot of deaf people everywhere and sign language will give you the chance to talk nearly just as oral speakers. And even though most people don't know signs, that is no reason to worry, there is, as I mentioned, a lot of deaf people. And huge deafblind communities in most larger cities. I think people which doesn't have any experience with deafness might fear it, I can understand them. But as my hearing is going down, and I speak both sign and oral, depending who I am with, my vision and RP worries me most. What will I do the day I have to give up reading with my yes...don't know. But is something gonna "kill" me, it's poor vision and having to rely on others, not the ability of not hearing the newest hits!

Do any others agree with me?"

Sindre Rasmussen (Rplist)

**25. "Penny here... mother of a son with usher syndrome. Timing is usually
interesting. While reading email this morning, I read this from the
Deaf-Blind list. I thought it might be interesting to share with you. I
think it goes along with Dorothy Stiefel's email from yesterday. I wonder
if there is such a poem for being Blind?

Deaf

What is it like to be deaf?
People have asked me.
Deaf? Oh, hmmmm, how do I explain that?
Simply, I can't hear.

Noooo, it is much more than that.
It is similar to a goldfish in a bowl.
Always observing things going on.
People talking all the time.
It is being a man on his own island
among foreigners.

Isolation is not a stranger to me.
Relatives say "hi" and "bye".
But I sit for five hours among them.
Taking great pleasure at amusing babies.
Reading books, resting, helping out with food.

Natural curiosity perks up
Upon seeing great laughter, crying, people upset.
Inquire only to meet with "never mind",
"Oh, it is not important".
Getting such a summarized statement
of a whole story.

Supposed to smile to show the happiness.
Little do they know how truly miserable I am.
People are in control of language usage,
I am at loss and real uncomfortable.

Always feeling like an outsider
among the hearing people
Even if it was not their intention.
Always assume that I am part of them
by my physical presence, not understanding
the importance of communication.

Facing the choice between the Deaf Camping
Weekend and Family Reunion.
Facing the choice between the family commitment
and Deaf friends,
I must make the choice constantly,
And wonder why I choose Deaf friends???

I get such great pleasure at Deaf Clubs,
Before I realize, it is already 2 am
whereas I anxiously look at the clock
every few minutes at the family reunion.

With Deaf people, I am so normal,
Our communication flows back and forth,
catching up with little trivialize, our daily life,
Our frustration in the bigger world,
Seeking the mutual understanding.

Contented smiles, and laughing are musical.
So magical to me
So attuned to each other's feeling.
Truly happiness is so important.

I feel more at home with Deaf people
Of various colors, religions, short or tall,
Than I do among with my own hearing relatives.
And wonder why?
Our language is common.
We understand each other.

Being at a loss of control
Of environment, that is, communication,
People panic and retreat to avoidance,
Deaf people are like the plague.

But Deaf people are still human beings
With dreams, desires and needs
Of belonging, just like everyone else."

By: Dianne Switras"

Penny Poindexter (Rplist)

**26. "Had to post this about Helen Keller. She was NOT born blind or deaf.
At about age 2, she contracted measles THEN became blind and deaf. At that
age, she was just beginning to say a few words. But, it is almost like she
was born that way, because there were no treatments or schools that could
help both blind and deaf people when she was diagnosed.

I have always said that I wouldn't mind loosing my hearing, but I really
treasure my eyesight. And here I am, deleing with RP and less than 20
degrees in both eyes! I know I could do without the noise, as I was once
an avid reader. I used to do a lot of writing, too, so hearing loss
wouldn't be as big a deal as this vision problem."

Gayle Araki (RPlist)

27. "Amen to that!"

Carolyn Gold (Rplist, rgold2@tampabay.rr.com )

**28. "You may think I'm not qualified to say anything about the
loss of sight or hearing as I am fortunate to have both. However, I
have always thought that to lose the ability to hear would bring me much
more personal anguish as I do not enjoy total silence at the best of
times. If I were to lose my sight I would still hear my lovely music,
my son's voice, children's laughter, birdsong and many things that bring
me pleasure. To see birds in the trees, children at play and someone
talking to me and not hear these things would bring me pain."

Anne Hallsworth (Rplist, blue.lace@cableol.co.uk )

**29. "Ah, a two headed coin. Would I rather be deaf and not hear music, the
laughter of a child, or the birds singing in the morning? Or would I rather
be blind and not see the dew on a blooming flower, the color of a sunset, or
the sparkle in a child's eyes? Honestly, since I am blind and am adjusting
to the alternative ways of doing things, I would rather be blind."

Rhonda Sampley (Omaha, Nebraska, USA)

**30. "I was born with 50% hearing loss and my parents could afford only one hearing
aid. I learned to "hear" with my one hearing aid and with my two eyes by
lip-reading. When I left home and finally became an independent individual, I
bought myself two hearing aids and was able to not rely so much on the
lip-reading but would use the technique on special occasions when my aids
weren't sufficient enough to pick up on conversation in noisy situations. At
the age of 26, when I learned of this newly discovered connection of Usher
Syndrome (the name was circulated in the year of 1974 and this diagnosis came to
me in 1976) through my second opinion examination at the U of MN Eye Department,
I said one thing to the doctor after his report of their findings: "You say
that my hearing will be stable...but, you say that I will become legally blind
someday? HOW am I going to hear without my eyes?"

Definitely, I'd opt for hearing loss rather than vision loss. I functioned
quite well with hearing loss with hearing aids and lip-reading until my vision
loss began to progressively become a challenge. At least, for me, it has been
told to me by my doctors, that my hearing impairment should remain the same
throughout my life...in which, it has. But, there are others who have both
losses and will find that their hearing will progressively become worse in time.

Deaf or Blind? I'd say now: No matter which one a person is afflicted with, or
is afflicted with both losses, life still goes on and to be as positive and
assertive as one can be...it's not really all so bad - that is, unless you let
it! If one method of communication fails, then take on another method. Soak
all information of life in any manner that can be gathered."

Adrienne Haugen (Rplist, Ade MN, USA)

**31. "I don't recall who it was, but somebody once said that the blind person has
great difficulty getting around in his world, whereas the deaf person can
travel around in it without difficulty but doesn't understand it.

I think we tend to underestimate the importance of sound, especially as it
concerns language. If you have ever spent much time alone in a country where
you know nothing of the language, you will have learned not to underestimate
the importance of sound.

Both sight and hearing are major senses of course, and the loss of either is devastating. Almost everybody on the list has said that the loss of sight is worse, but I can't help wondering if we tend to feel that way precisely because that is the prospect or the reality that we are all dealing with.

I'm sort of playing devil's advocate here. I have spent a lifetime listening to how people talk, in various languages, so sound is particularly important to me."

William Thornton-Thrump. (Rplist,
trump@istar.ca
williamtrump@hotmail.com
Chelsea Gardens #211
13888 - 70th Avenue
Surrey, B.C.
V3W 0R8
CANADA)

**32. "About this thought provoker, I chose loosing hearing as opposed to sight.
Today, I met a man that has Usher's syndrome. He is now both deaf and
blind. I'm not sure when he became this way, since he worked for 22 years
without any problems. His way of conversing, was with a Braillewriter - I
think that's what it's called. He had interpreter who would type what was
said, then it would be translated into Braille, where he could "read" what
was said. He was still able to talk, so he would ask questions and I would
answer. In a way, it seemed kind of rude, but knowing that he couldn't
hear made it fun for me to talk with him. He has adapted quite well and
amazingly. He didn't have a choice!

Gayle (Rplist)

**33. "This is an issue I have long pondered and discussed with many friends.

I think it would be much harder being deaf than being blind. I have often
wondered how the quality of my life would be if I could no longer listen to
music, to my children's laughter, to the sounds of my loved ones calling my
name and the mere act of communicating verbally with anyone. I think I would
feel totally isolated from society if I were deaf.

I'm sure adaptations are made in either case, but frankly cannot imagine
not being able to hear all the lovely sounds that I'm sure I take for
granted daily. These are just some of my thoughts."

Lana, (Rplist, Philadelphia, Pa.)

**34. "I have at times in my life given consideration to this issue, and I spent
probably as much time doing so as many others. I think it is a part of the
sole searching each of us engages in as we attempt to sort out the direction
of our lives, and the true impact that blindness will have on its course.
At that time in my life such matters seemed an important mental exercise,
something that would allow me to establish my place in the natural order of
things. Who's better off than whom?, what makes life more difficult?, and
will knowing that someone is worse off than I am make me feel any better
about my own situation? The fact that such thoughts were once a part of my
own thinking makes it very clear to me how long of a road we each must
travel as blind people. We must pass through these harsh conditions if we
are to reach our goals, and we will most certainly not arrive when or in the
manner we expected, nor will we be what we imagined our selves to be at the
beginning of this adventure. The knights of the round table searched for
the Holy Gralle, only to discover that the greatest gift was in the seeking.
Developing our skills to a fine edge, or fighting for social acceptance, as
important as these things are, are not as vital to us as the changes our
efforts bring within each of us. each of us must gather our experiences and
from it create a very personal philosophy of life and blindness. My own is,
"The quality of life is what you make it. Its not what you have, but what
you do with it that counts." I would no more attempt to judge the quality
of life for a person with another disability, than I would allow another
person to judge the quality of life I should accept for myself."

Jeff Altman (Lincoln, Nebraska, USA)

**35. Robert....Good one.....I think that I'm so used to being blind that it would be harder not to hear as I rely on my hearing a lot of time rather than my sight.

You know I think of it that after I lost my sight I've still got my other senses to rely on
and sometimes (with the right guide) nobody even knows that I can't see!!!
We've got so much to be thankfull for !!!!
It makes you think though…

Luv Ya !!!!!!"

Rudi Scheepers
(Rplist, Cell:- +27 82 855 3987
Tel:_ +27 11 302 7407
Rudisc@za.ibm.com )

**36. "There is an old saying. You must walk a mile in my shoes. Then there are
those who have no shoes and can not walk(paraplegic)."

A Prophet

**37. "Hearing is one sense that we don't get tired off as easily
as other senses (for instance, watching a movie vs listening
to music vs smelling a fragrance vs etc. for 2 hours)
It has been said that when a person dies the last sense to
go off is hearing (touch is the first one to go)"

Jaya(Rplist)

**38. "A lot of interesting comments to the Deaf or Blind Thought Provoker. Of
particular interest to me was the comment on cancer becoming a greater fear
than blindness, and AIDS greater than cancer.

Being a 4+ year cancer survivor... I'd have to say I'll stick with the devil I
know rather than the one I don't, as many others have (more or less) said.

Being both sighted and hearing, with minor difficulties with both senses...
all I can really say is that deafness would require much less of an overhaul
of my lifestyle than blindness."

Brett (brettcrow@aol.com)

**39. "WOW..Now we touch on a thought provoker that I can really relate to. I too
have had the question "would you rather be deaf or blind?" put to me on
numerous occasions. Back in 1977, I entered a college for the deaf. I never
quite fit in because I was not totally deaf and I had gone to public schools
as opposed to Deaf schools. Over time, I lost more of my hearing and truly
considered myself deaf, I became proficient in sigh-language and active in the
"deaf community." While still in college I found out that I had Retnitis
Pigmantosa, the type I have is Usher's Syndrome. I knew from meeting others
with the same condition and speaking with various doctors and professionals,
that I was liable to end up deaf & blind. For years, when this question was
posed to me, I said that I would rather be DEAF. My thinking was that I could
well do without hearing, but always wanted to be able to see everything, my
perception of blindness was as it is with many, terrifying and seemly
hopeless. A number of years later, I moved to Nebraska and joined the
National Federation of the Blind. I also began my training at the Services
for the visually impaired. I felt I had no choice but to adjust and wait for
the inevitable, total deafness and blindness. I felt my life would always be
filled with challenges and fears. I still thought I would rather be deaf than
blind, if I had to choose. No one wants to be either one. Then one day I
heard that I did have a choice, and by my faith in the Lord, I knew it was a
life-altering decision to make. I came to learn about the Cochlear Implant,
which is a surgically implanted device that will in time enable me to hear
much the way most of you do. I had this procedure done just last October.
What a huge world that has opened up to me, so many new sounds. It is still a
struggle to adjust to what I call becoming a Hearing/Blind person. This has
changed my life in more ways than I can say. This Cochlear Implant is a
wonderful thing that will help me in many ways, so now what do I answer? I
would still rather be deaf. My reasoning is this. Like a person who is
suddenly blinded and thrust into a world of unknown and uncertainty, I too
am thrust into a world of which I have little knowledge. I believe that
through support and faith in the Lord and myself, that I will adjust and
appreciate it more over time. Blindness and deafness really has nothing to do
with what I am, so much as it does who I am. But deafness played a huge role
is how I developed over the years and my way of thinking. Now all of that has
changed. Sound, voices, and music truly define who we are. I feel now that
sound affects how we communicate and how we perceive many things. I am like a
newborn baby in some ways, hearing sounds that I try to emulate or noticing my
own speech changing because I am picking up on speech patterns. My
relationships are changing as well, I am no longer accepted by the Deaf
community in general, nor can I really relate to hearing persons the way I
wish. So, I think it would be difficult for anyone to say weather they would
prefer to be deaf or blind, unless they have been....deaf, hearing, blind and
sighted. Otherwise, how could one truly make an accurate assessment? In any
case, I know this, I will go forward and I will achieve much more through this
gift I have been Blessed with, the Cochlear Implant."

Sheila L. Loos (Lincoln, Nebraska, USA)

**40. "I noticed several posts about Usher syndrome. For those interested,
below is a description of the disease.

The Foundation Fighting Blindness

INFORMATION ABOUT USHER SYNDROME- Usher syndrome is an inherited disorder characterized by moderate to
profound hearing impairment, which is present at birth or shortly
thereafter, and progressive vision loss due to retinitis pigmentosa
(RP), a degeneration of the retina.

CLINICAL DESCRIPTION- There are at least three different forms of Usher syndrome. Individuals
with Usher syndrome type I are born profoundly (completely) deaf and
experience problems with balance. In adolescence, they usually begin to
exhibit the first signs of RP--night blindness and loss of peripheral
vision.

Individuals with Usher syndrome type II experience moderate to severe
hearing impairment at birth, but they do not have balance problems.
Symptoms of RP develop later in adolescence.

In 1995, researchers documented a third type of Usher syndrome known as
type III, in which hearing loss-like the vision loss due to RP-is
progressive.

Hearing loss in Usher syndrome is due to a genetic defect in the sensory
(nerve) cells in the cochlea, a structure within the inner ear that is
necessary for transmission of sound to the brain.

This same gene defect also adversely affects photoreceptor cells in the
retina, leading to vision loss. The retina is a delicate tissue in the
eye composed of multi-layered light sensing cells. Photoreceptor cells
are responsible for converting light into electrical impulses that
transfer messages to the brain-where "seeing" actually occurs.

INHERITANCE- Usher syndrome is passed to succeeding family generations through the
autosomal recessive inheritance pattern. In this type of inheritance,
two copies of an Usher syndrome gene, one from each parent, are required
for a person to have the syndrome. An individual with only one copy of
the gene is called a carrier and will have no symptoms of the disorder.

There are about 15,000 people with Usher syndrome in the United States.
Approximately 30 percent of people with RP report some degree of hearing
loss: about half of these cases are actually diagnosed as Usher
syndrome. One to three percent of all cases of profound deafness is
caused by Usher syndrome and it is the major cause of deaf-blindness.

TREATMENT- Intensive research is currently under way to discover the cause,
prevention, and treatment of RP. At this time, researchers have
identified a first step in managing the vision loss. While not a cure,
a specified dose of vitamin A has been found to slow the progression of
RP in some individuals with typical RP and Usher syndrome type II.
Contact your doctor or The Foundation Fighting Blindness for more
information.

Researchers have mapped the chromosomal locations of nine different
genes that account for the various forms of Usher syndrome. Of those
nine genes, two have been isolated and cloned. In June 1998, Foundation
scientists identified mutations in the gene responsible for Usher
syndrome type IIa, the most common form of the disease. In 1995,
Foundation researchers identified mutations in the Usher syndrome type
Ib gene. Research to identify the remaining genes involved in Usher
syndrome is moving at a rapid pace. In the near future it should be
possible to perform genetic tests to determine if gene defects causing
Usher syndrome are present. When available, this testing will provide
an accurate genetic diagnosis useful for early detection of the
disorder, and for defining the risks of other family members or future
offspring being affected.

Currently there is no way to halt the degeneration of the retina or to
restore normal hearing. The hearing loss of Usher syndrome is due to an
inner ear problem, which cannot be corrected with middle ear surgery.
Some patients with severe hearing impairment have benefited from
cochlear implants. Others with residual hearing may benefit from the
use of hearing aids.

RELATED DISEASES- Other conditions, some of which are inherited, can result in deafness and deaf-blindness but are not related to Usher syndrome. However, the
RP associated with Usher syndrome shares most of its characteristics
with typical RP. Researchers expect that advances in the understanding
and treatment of either RP or Usher syndrome will be directly useful to
the other.

The Foundation Fighting Blindness
Executive Plaza I, Suite 800
11350 McCormick Road
Hunt Valley, MD 21031-1014
1 (888) 394-3937 (toll-free) 1 (800) 683-5551 (TDD for deaf)
1 (410) 785-1414 (Baltimore area) 1 (410) 785-9687 (TDD for deaf)

The Foundation Fighting Blindness is a research foundation dedicated to
finding the causes, treatments and cures for retinal degenerative
diseases like retinitis pigmentosa (RP), Usher syndrome and macular
degeneration."

Tom Hoglund (Rplist)

**41. "I thought long and hard on this one, and finally came to a decision. Maybe
the decision I made was because I have had site before and still have a small
amount. But to me, I would prefer to lose my sight than my hearing. The
reason is that sounds, music, listening to the wind, or the rain on a roof,
can bring vivid images in my mind to remind me of memories or familiar
visions. It also allows me to listen to others and even though I cannot see
their face, I can see the inner soul of the person without just looking on the
surface. I can hear the emotions, attitudes, and tone in which they speak.
This helps me to see the real person and what's inside instead of the image
they want to portray to society.
I love music and I believe it is the emotions of our souls. Without the
melodies, I feel that I would lose touch with my own inner thoughts and
feelings. Of course, this is just my opinion, because I have always loved the
sounds of nature and the voices of people and with these sounds, I can still
see the world as I remember."

Ann Duncan (Missouri, USA,
Tear2many@aol.com)

**42. "Either can be mastered by most people. The higher the culture the better your chances to make a "normal life" for yourself. But even then, there are times it is hard to have a disability."

(The Human Race)

**43. "I am very grateful for my excellent hearing and the vision I do have.
Since I use my vision as well as my hearing quite a bit, I believe I would
be devastated if I were to wake up one morning and discover that I have
lost my remaining vision, my hearing, or both!"

Abbie Johnson (Sheridan, Wyoming, USA)

**44. "Good provoker, and good story to lead in to it! This one seems to have
generated a lot of ideas, and I'm kind of surprised at some of them.

Having been blind since age four months, I'd have to go with blindness, but
that's because it's what I know. I couldn't imagine not hearing things! I
also haven't liked some of the inferences that blindness prevents you from
getting around, reading, writing, etc... All these things can be done,
only with different methods. That's like saying a deaf person can't
communicate: they can, just differently. It seems common that people who
have a disability always favor their own, and think another would be worse.
I have a friend in a wheelchair, and I can't imagine not walking, running,
and so on. However, she can't imagine not seeing, but she knows I adapt as
she does. Humans seem to be quite adaptable, and we learn to live the best
lives we can with what we have, or may not have. As Robert seems to be
keeping track though, I'd rather stay with my blindness!"

Alicia Richards (Lincoln, Illinois, USA,
arichard@lccs.edu )

**45. "I'm still trying to catch up with you folks! Have you heard of our Miss
Alabama who became Miss America? Heather Whitestone? She is deaf and
has overcome the disability and gone on to fulfill her life's goals.
She has written a book but I do not remember the title of it. As for
me, it would be difficult to decide which would be worse - blindness or
deafness. I love people and enjoy verbal communication with them. If I
were deaf, I would miss that very much. However, there are so many
things I like to do that requires sight. Mobility, reading, crafts (long
gone), traveling to see the beauties of our land, etc. But since I am
growing older and older, the thing I fear most is mental deterioration.
So you see, there are worse things of being either deaf or blind! You
can learn to cope with either deafness or blindness, but there is no way
to really cope with Alsheimer's. So, I count my blessings every day!"

Novelene Freeman (RPlist)

**46. “The book referred to in one of the responses is listed in the
January-February Talking Book Topics. It is called LISTENING WITH MY HEART
and is RC45339. The author is Heather Whitestone. The little blurb says,
"Miss America 1995 tells of growing up deaf and loving dance." I haven't
read the book yet, so that's all I know about it.

blindness, I know what it's like to be blind, having been blind all my life.
I find it a nuisance sometimes, but not a major downer. I have had my
hearing temporarily impaired by congestion a few times, and found it both
frightening and frustrating when it happened in an airport while traveling
alone. I know I would need to learn different communication skills if that
were to be a permanent part of my life. I hope I would have the strength
and the will to do it.”

Barbara Walker (Lincoln, Nebraska, USA, bwalker@inetnebr.com)

>**47. “Hi everyone. I was thinking about this thought provoker, and have only one
comment. I am blind, and would choose it over deafness. I have been able
to do anything I wanted to do except drive a car. That is a nuisance; but
have been able to get anywhere I wanted to go. Have done radio and
television repair. Well that's all I have.”

Hank Vetter (Omaha, Nebraska, USA, hank.w0egm@worldnet.att.net)

**48. “As to the question of blindness s to deafness. Is it not the same question of are you stupid or are you just an idiot. That might sound a little harsh, but so be it.”

Robin Rush (West Point, Nebraska, USA)

**49. “Robert, it was very interest to me. I was wondering if the deaf person
must be the sighted-hearing interpreter or SSP and the blind person must
be deaf-blind, but the people who looked at them in wrong label. Why do I
think? Because they how-did-they -know what the others say around them.
Or do the writer make up the story?”

Leslie Peterson (Minneapolis Minnesota USA)

**50. “I am deafblind and love music, Christian stuff, food and lots me.”

I really find it hard the answer the question of what it is better to be.
Deafness is more frustrating because of noise etc but blindness can be hard
for not been able to read etc...
deaf blindness is unique problem which only we can really imagine.
Thanks and god bless you all”

Steph Franklin

**51. “I hope it is not too late to write something here, and that it's okay that I
am still sighted, but you know, guys, from my point of view, losing my
hearing would be the "Disability of choice" over blindness. While I'm sure I
would feel as though I've lost some of my independence without my hearing, I
know I would feel I've lost all my independence without vision. After all,
if I could not see, I would be totally dependent upon either a cane, dog or
person just to leave my house!
I have also heard that going blind is the number one fear, though I can see
how it would get bumped down the list after HIV or cancer. A few years ago a
poll of elementary school children revealed that blindness was number one
among the kids, with losing a parent, of course, next. I don't remember the
others. I think part of the fear of losing our vision is that blindness is
so visual. I know that sounds weird, but if a person has breast cancer and
walks into a busy shop, the clerk doesn't say "I'll help you, there, the
mastectomy wearing red", but just how do sales people address the blind
person? If a deaf person is standing in front of something, a person
wouldn't say "Oh, yes , it's behind the deaf person over there", but rather
he or she would be described by hair color or clothing. If a blind person,
with a cane or dog, was standing in the same spot, the description would
obviously be "Over there behind that blind man". I feel that everyone has
problems, disabilities, incapability’s or whatever. Everyone has something
wrong with them, even if it is just bad breath. No one is perfect, but in
this generation, we strive to be, and we hide from most people our own
personal "handicaps", but when you're out there swinging a white cane around,
or gripping a guide dog, everyone knows what your problem is. You can't see
what's wrong with me if there is anything wrong, or even if I am there if I
choose not to let my presence be known to you. A deaf person would have a
problem if someone were to sneak up behind him, but his ability to navigate
would not indicate to others whether he was deaf or not. This is how a
sighted person could look at this issue. A person who has never been either
deaf or blind would never ever be able to fully understand the depth of each
disability and therefore can't compare them, but I wonder why it is that a
lot of people say they are afraid of the dark and have nightlights on around
their houses, but you very rarely hear of people who are afraid of the quiet
and have to have little music boxes around the house? Well, you've provoked
these thoughts from me.”

Karlishia

**52. "I do agree with Alicia (resp. no. 44) that it's a little irritating that people think those of us who are blind can't get around, or that it is very difficult. We use different methods--a cane, a dog--and while there are some inconveniences at times, these don't present major inconveniences to me personally. So I guess I am dependent on my cane, but sighted people are dependent on their sight

(see resp. no. 51). I'm not unusually concerned on a daily basis about the fact that my blindness, and the way I travel, is open and obvious. But that’s my personal soap box, and I'm sorry to all for climbing on my high horse. Now for my answer. I've always been blind, I always will. I'm a very auditory
person and the thought of not being able to listen to the music that comforts me in times of trouble would devastate me--but that's only because I've always had it. The thought of not hearing the voices of the people I love is overwhelming to me--but only because I've always had that. Could I adapt? Probably, if I had to. I'm 35 now, and have been losing my hair slowly, and I wasn't too pleased with that initially until I just learned to live with it! Cheers!

John D. Coveleski (New York, New York USA)

**53. I suggest that a blind person would probably say they would rather be blind, and a deaf person would say that they would rather be deaf if they ventured to give a preference at all. I also suggest that neither would rather be either, but should the inconvenience fall on any individual,
they could learn to adjust quite satisfactorily. I do feel, however, that it would be great if so much ignorance did not exist by those who are perceived
to be ‘normal.’”

Jesse (parents/NFB)
**54. “I can't stand when society stares at me and says things like "poor girl" or "how does she do it?" I think that being ddeaf or blind has its obstacles, but
like anything else, adaptations could be made. We are no different than anyone else!!!”

(NABS/NFB)
Lisa

**55. "This question reminds me of the expression "help those less fortunate than us." Isn't this promoting a thought process which hurts all the disabled.
Why am I overall less fortunate than anyone else? Why should I assume that
deaf and/or blind people are less fortunate than the rest of the world. And, why on earth should I try and create a hierarchy within the group of disabled?"

The National Federation of the Blind of Illinois
We are changing what it means to be blind.

Patti S. Gregory-Chang
Secretary NFBi

(773) 763-5302

**56. "I don't think anyone could know that they would rather be blind or deaf unless they had experienced both separately for at least one year and then recovered completely from both, even then it would still be an individual opinion as it depends on the services & equipment available in your area as to how difficult
& life changing the deafness or blindness would be.”

David

**57. What a great Thought Provoker! I have been blind since birth, and I think I will keep it that way. There were a couple of times when I was sick, that so
much fluid built up in my ears as a result of coughing, that I couldn't hear very well out of one and not at all out of the other. I found myself not being
able to hear well. I could tell by the vibrations that someone was talking to me, but I couldn't tell what they were saying. I did at one time know a little
bit of sign language but I've since forgotten it. I do totally agree though with the person who said that there are times when having any type of disability
is hard. But I wouldn't want to be deaf, no offense of course to those who are deaf or hard of hearing.

Jake Joehl, Chicago Illinois