THOUGHT PROVOKER 50

Going Blind Fast Or Slow

     I was walking through the commons area of a crowded shopping mall. This trip was part of a solo lesson assigned to me by my travel instructor. There were people wall to wall, so I had my Long White Cane held in a pencil grip to keep it in close. "Excuse me!" I said aloud. My cane had just tapped the leg of someone, a member of one of those unexpected, stationary clusters of talkers and gawkers that pop up when you least expect them.

     "That’s okay." Said a woman. "Oh, what a coincidence! Here I stand, talking to one nice blind gentleman and you bump into us! Do you two know one another?"

     The guy was named Chuck and we did know one another. He had recently completed the same rehab training center I was now attending.

     "Chuck was telling me about blindness, why he uses a cane and how he has been gradually losing his sight for five years. Now what is your story?" She asked, enthusiasm and genuine interest bubbling in her question.

     "Well…" I didn’t mind talking about it, I did want to help others to learn about blindness. "I went blind nine months ago in a car accident. One minute I could see, then in the next, I couldn’t."

     "Oh…" She almost cooed. "So you both were normally sighted... Where you went blind like that!" "SNAP!" Went her fingers, right under my nose. "And, Chuck, you’ve been going blind in stages, for years? Hmm…" Her voice trailed off and it was obvious the wheels of thought were turning.

     I tapped Chuck on the leg with my cane, a signal of sorts, a message of, "Bet we can guess what will be her next round of questions! ‘Which is easier or harder or…’"

RESPONSES
e-mail responses to newmanrl@cox.net

**1. “Provoker 50 is one that I've had many opportunities to think about and
discuss over the past thirty or so years. I've spoken with many classes
and groups about blindness: what it is; what are the problems or
limitations; how do I or we become more independent. When I mention that
blindness is actually a continuum from no light perception to having a
good deal of remaining vision and that the condition may occur quickly or
quite gradually, I can always expect the question of which is better or
worse. My answer is that it all depends on the person, how he/she copes
with it and the reactions of family and acquaintances. Of course I
indicate that, when it comes to speed of onset, each has pros and cons.

On one hand, slow loss of vision gives the person opportunity to learn
adaptive skills while still able to see, but may enable him/her to deny
the condition and/or repeatedly seek cures instead of coping. Of course,
losing vision gradually means that the person be able to adjust
gradually, thus avoiding the tremendous shock of instant and complete
loss.

Quick loss, which is how I became totally blind, forces the person to
learn adaptive skills and may shorten the denial phase, but the shock
could result in more intense depression and a sudden decrease
incompetence. Regardless, the most important factor is the person and
how he/she copes with the disability.”

Doug Hall (Daytona Beach, Florida USA
fl_halls@juno.com)

**2. “I am going blind slow, piece by piece and it is HELL! It is one heart break after another because you find yourself getting use to one level of sight, then you lose more vision and you have to start all over again with the emotional stresses and learning skills. Each time you see less and so can do less as a sighted person. And each time you lose sight you get closer to where you don’t want to go. It’s like being tortured by someone tying you up so you can’t use your arms and legs and they have you dangling over a fire or bottomless pit and they let the rope slip and slip and you never know when it will slip again and you go down and down. I think I will be happy when it is all gone and there is no longer the agony in the transition and no longer the choice to not face the inevitable. Going blind in a snap must be easier.”

Jerry P. (Kansas USA)

FROM ME: “What strategies can be used in a case like this one to make the transition from one level of vision loss to a new and lesser level? Would training under a blind-fold work? Would you also employ low vision tactics along with the blind-fold? I’m reading between the lines that a low vision strategy was used at each level, is this enough?”

**3. “I have reflected on this Provoker many times over the years. There are so
many variables that could go into considering the answer and I think I
finally came up with a plausible answer.

Until one individual is able to experience both instances, how can one
really answer the question with any real sense of understanding?

For every point I can make for it being harder to lose my sight gradually (I
am losing my sight to Retinitis Pigmentosa); a person who either lost sight
suddenly can come up with an equally valid point. And that debate even has
a third side; those who never had sight. They have an equally valid side to
this. And really there is even another side......those who began losing
sight as children versus as adults.

So in a way, I look at this debate in the manner of looking at the debate
over the loss of a loved one. Is it better to lose someone suddenly or over
time? No matter which, the loss is real, emotionally difficult at times and
we all handle the loss differently. Some need a lot of emotional support,
some need assistance getting on with their lives and others never get over
the trauma. There is no *set* pattern of acceptance or rule of thumb. We
each handle loss in our own unique style.”

Debra Streeter, M.Ed. (Victoria, Texas USA)

FROM ME: “How a person has learned to cope with stress in general prior to the loss of vision would effect how they handled the onset of blindness, right? Is it possible to learn new strategies for handling stress? Where might a person learn these new strategies?”

**4. “In response to the question, "Which do you think is easier: going blind
gradually or all at once?" I always respond, "What makes you think anyone
has a choice?"

When talking to the general public about blindness, I think it is
important to distinguish between those questions which will lead to a
person becoming more educated about blindness, and those questions which
are simply voyeuristic and nosy. Talking to others about how blind people
do things, the types of jobs we do, etc. is very informative and we should
all be willing to discuss such topics with anyone who is interested. On
the other hand, questions motivated only by curiosity, addressing one
person's individual case, serve no purpose and provide no worthwhile
information about blindness in general.

Let me give a related example in another context. I have a friend who
is very large, nearly 400 pounds. He says that people often stop him on
the street to ask, "How much do you weigh?" or "How high is your
cholesterol?" He tries to laugh about it, but I find it outrageous. Those
of us who are of reasonably average size are never asked how much we weigh;
it's a personal question, and everyone knows that it would be rude to ask.
But because my friend is visibly different in this one respect, the usual
rules of courtesy are ignored.

The same applies to us as blind people. When a stranger stops us and
asks, "Do you mind if I ask a personal question?" we know perfectly well
that they are not going to ask about our weight, our income, our sex
habits, or anything else that might be considered "Personal." But because
our blindness makes us stand out in an obvious way, they assume that that
part of our lives should be a goldfish bowl! Educating the sighted public
about blindness does not require giving up that basic right to privacy
which is a part of first class citizenship.”

Carolyn Brock (Portland, Oregon USA)

FROM ME: “I personally have experienced the public being too quick to put their hands on me, the blind. What is this; good and/or bad, where does this come from? Is there any changing to be had here?”

**5. “This is Ron Brooks in Albuquerque. I think that the speed with which someone loses his or her sight will affect each person differently, thus there are no overall positives or negatives for going blind quickly or slowly. In my own case, I had glaucoma from birth. I began life with limited vision which deteriorated slowly throughout my childhood. By the time I was 13, I could still see a little but only well enough to do certain things. For example: I could ride a bike (all be it a bit hazardously), but I couldn't read without strong magnification. I could play basketball, but I couldn't read people's facial expressions or tell much about their clothes. At this point, I was playing basketball with friends when I got hit by the ball while going for a rebound. Snap! I lost the rest of my vision (save a little light perception) overnight. "So in some cases, a person can lose his vision slowly and quickly at the same time. As for how I handled it, I can't really say. I handled it the best way I could which would have been inspirational for some and embarrassing for others. At times, I was fine with the changes; at others, I was nearly suicidal.
So I'm rambling a bit. The bottom line is that whether one loses vision quickly or slowly is not the point in my book. The primary point is learning to cope with the loss no matter how serious or moderate. I would add that in an ideal world, it would be nice to know what the ultimate level of vision loss will be. That way, one can prepare for the final stage and not some transitional level which will only last a short time.”

Ron Brooks (Albuquerque, New Mexico USA)

**6. “What is easier, fast or slow? That is a question I don't believe any of us will be able to have the answer to. Blindness is a personal thing that even another blind person doesn't know how we feel or how we acted to the blindness. For no matter if it is losing ones sight over night or over the years we all deal with blindness in a different manor. We all have one thing in common, and that is we have had a great lost and we all must find our own way to deal with the denial, anger, and grief. All another person can do is share ones experiences and hope it will help others to know that blindness isn't the end of the world.”

RJ Fugagli (Franklin, Pennsylvania USA)

**7. “I think in some ways it is easier to adjust to blindness if you lose your sight slowly. It gives you time to adjust yourself and time to devise new ways to cope.
I am speaking from my own experience. I started losing my sight at a young age, but it happened slowly and I had time to adjust and adapt to the situation.”

James Congdon (Milwaukee, Wisconsin USA)

**8. “Fortunately, I have been visually impaired all my life. However, in my work with senior citizens, I have run across many elderly people who were once sighted but have lost their vision either gradually or quickly. I think it would be worse to lose one's vision later in life. However, I think that if I had a choice between going blind fast or slowly, I would prefer to lose my vision slowly. That way, the process would be gradual and I would have more time to adjust to the eventuality of becoming totally blind. I think it would be a real shock to suddenly lose one's vision without any preparation for the fact.”

Abbie Johnson (Sheridan, Wyoming, U.S.A. )

FROM ME: “How about a new THOUGHT PROVOKER on what is like to go blind at an older age verses going blind as a kid? The PROVOKER “Blindness and Hot Rods’ (available upon my website) is one that some what addresses this issue, yet a new take on it may be a good idea for the future.”

**9. “I'd have to say it's easier to go blind in stages. Gives a person time to adjust to the idea, develop coping skills and plan! Since I work on the telephone, I have been able to change my work situation in stages, not losing my job in the process of losing my vision.

The downside of this is that it does make a complete adjustment harder. How much vision will be lost? When? all are questions that make the process less finite. The hope that eyesight loss can be limited, the uncertainty as this or that treatment is tried or avoided... But still, I would far rather go slowly than a sudden catastrophic event. Just my opinion and not valid for others particularly.”

Sylvia Stevens (USA)

**10. “I think, on first reading of this PROVOKER, that loosing sight suddenly would force one to adapt--sink or swim--and emotions, though strong, one would have to deal with life head-on. But if one looses sight gradually, I imagine that the emotional trauma of having to readjust every time a little more sight goes away would be difficult if not impossible to deal with. My feeling is that being there is never the same as "I will one day be there!" So you have this anticipatory
experience with the one who is loosing his sight and the "I am” experience by the one who went blind suddenly. People can many times
imagine how "being blind" will be, but till you really cannot see, you can't quite know how to deal with it.

When I was small, (till age twelve) I could see light and colors but had no real "vision" since I could not use it to identify people or places etc. When my retinas detached I was suddenly missing what I had, even though it wasn't much and for a very long time I missed seeing light!! But I was forced to adjust to not seeing light, and did, and I had no choice--I couldn't take off the blind fold, and I couldn't remove the emotion of being sad that I could no longer see the light, but I could adapt to my new set of circumstances.
These are my thoughts on this PROVOKER, and I haven't a clue what the last bit was about where the girl taps the guy on his leg in anticipation of what was coming next was about.”

Phyllis Stevens (Johnson City USA stevensp@chartertn.net(

FROM ME: “Here is a weird question, an analogy- think of how most of us, when we know there is going to be pain, we choose to have it all at once like quick an sharp in order to get it over and done with. Example- When taking off a bandage, where it is stuck to our skin or maybe in pulling out a splinter or giving birth and we will opt to have it happen quickly rather than agonize over a prolonged process. And in saying all this about our dealing with physical pain, so is it different when we speak of handling mental/emotional pain? And if so why”

**11. I think it is harder for the person who loses vision over a long period. The techniques they learn at one point may not be useful later and the dragging things out makes adjustment harder. I lost my vision completely as a child and although I went through the same grieving, anger, fear and frustrations,
I think that the resilience of a child made those stages shorter. I have a lot of sympathy for seniors who face vision loss late in life. Since I have never driven, I have always dealt with the difficulty of being a pedestrian in a motor mad culture. Because I learned to read Braille as a child, I love to read and it is an annoyance that so much printed material is unavailable to me, but literature and reading for a leisure activity isn't. I wonder if people who lose vision a little at a time don't also tend to postpone learning the skills they will need or fight the learning because it seems like giving up their hope of successfully beating the blindness.”

DeAnna Noriega (USA quietwater@codenet.net)

FROM ME: So how about this point of someone who is going blind in stages being reluctant to learn non-visual techniques? What might be some reasons and why?”

**12. “I have reflected on this Provoker many times over the years. There are so many variables that could go into considering the answer and I think I finally came up with a plausible answer.

Until one individual is able to experience both instances, how can one
really answer the question with any real sense of understanding?

For every point I can make for it being harder to lose my sight gradually (I am losing my sight to Retinitis Pigmentosa); a person who either lost sight suddenly can come up with an equally valid point. And that debate even has a third side; those who never had sight. They have an equally valid side to this. And really there is even another side......those who began losing
sight as children versus as adults.

So in a way, I look at this debate in the manner of looking at the debate over the loss of a loved one. Is it better to lose someone suddenly or over time? No matter which, the loss is real, emotionally difficult at times and we all handle the loss differently. Some need a lot of emotional support, some need assistance getting on with their lives and others never get over the trauma. There is no *set* pattern of acceptance or rule of thumb. We each handle loss in our own unique
style.”

Debra Streeter, M.Ed. (Victoria, Texas USA)

**13. To answer the question, I would have to say that it's tough either way. I have gone blind twice now, and it wasn't fun either time. I have been legally blind since birth, due to prematurely. However, the first real vision loss I ever had after birth occurred when a blood vessel burst in my one remaining eye. I did not deal well with this situation. I was definitely in denial, and the doctor's assessment that the problem might correct itself didn't help me to adjust. I went through this for about eight months, and finally elected to go through with a surgical procedure that might correct
the problem.
Luckily, my sight was restored after this to legal blindness, but I still did not learn any alternative techniques, since my vision was good enough to allow me to walk around without a cane, to read regular print, etc. This state of affairs lasted another five months. Then, one day, I experienced a terrible attack of glaucoma. I went to the doctor, who told me that they needed to do emergency laser surgery to relieve the pressure. I agreed to have the surgery, although it was so painful at the time, I was ready to do *anything* to make it stop hurting. After the operation, I discovered to my dismay that I was totally blind. I still held on to the hope that my vision would return, and that I could continue
as before. Although I did get back a little vision, I had to live with the fact that it wasn't coming back this time. I still held out hope, against all logic, that I still might see again as I did before. I didn't get orientation and mobility training. I didn't learn Braille. I didn't make an effort to adjust, because I didn't admit to myself that I was blind for good. The one extremely lucky thing I had going for me was that I had learned about screen reading technology in my first job out of college. I had worked with some visually impaired students in the computer lab, and had learned how to use JAWS. Thus, I was still able to continue working and supporting my family.
I existed in this denial-filled state for about a year. Technically, I also moved on to the anger and depression stages, as well. It was a miserable existence. I drank too much, and was not kind to my wife, who still did her best to support and encourage me. Finally, it hit me that things weren't going to change, and that I was now officially a blind person. I don't know why this was so hard to accept, since
I had always dealt with eye problems my whole life. I had never considered myself to be blind, however, and it was a frightening realization. I don't know what suddenly encouraged me to get over the hump and accept things, but one day, I just woke up and moved on.
I decided that I had better get on with my life, and that, like it or not, I was going to live that life as a blind person. My wife encouraged me to get orientation and mobility training. She had to fight with the insurance company to pay for it, and encouraged me every step of the way. I learned to cross streets that I would never have dreamed of crossing before I lost my vision. I learned to keep a map in my head of where I was, and where I was going. I made myself learn Braille, starting over with "See Spot run" at the age of 29. I found resources on the Internet to educate myself about blindness
and alternative techniques, and I also read the experiences of others who had gone through this before. I think this last thing really helped me a lot.
I discovered that I wasn't some weird alien freak, and that thousands of people all over the world have coped with blindness. Wow, amazing! Life does go on after blindness! Two of the most important things I learned were to ask for help when I needed it, and to learn to take the every-day mishaps that can happen to blind people
with a sense of humor. Everybody needs help sometimes, and everybody does embarrassing things sometimes. It's just part of being a human being. Do I have bad days when I accidentally ruin my coffee with flour instead of creamer, because I'm in a hurry? Or bang my knee on a door frame because I'm too busy running my mouth to be careful? Of course I do! That's just what happens during life! What do I take away from those experiences? Label the canisters in the kitchen with Braille; don't hit snooze too many times; pay attention to my cane technique; and most of all, don't sweat the small stuff. I know that I am not through adjusting to blindness. Although I still have a little vision in one eye, that will likely disappear some day. Although there
will be challenges when that happens, I hope I'll meet them head-on and keep on growing as a person.”

David Thurmond (Atlanta, Georgia USA)

**14. “I don't believe that you can categorize adjustment to blindness as being easier or harder, depending on how quickly blindness occurs. The only thing which would make a difference, in each instance, is proper attitude toward blindness and access to good training of alternative techniques.

With a poor attitude, a person could wake up one morning with no sight and be angry and resentful. He could resist efforts to encourage him and teach him the proper attitude and techniques he needs to continue his life.
Likewise, the person losing his sight slowly could go through denial and not admit that he needs training. So, each of these individuals are really in the same position.

However, if a person, having suddenly lost sight is contacted with a good attitude and offers of proper training, and he accepts the help, he's on the way to resuming the life to which he's been accustomed. The person losing sight gradually can also make an easy adjustment with encouragement and training along the way.

But, it all comes down to attitude and the proper exposure to other blind people with positive attitude.”

Cindy Handel (Willow Street, Pennsylvania USA
chandel@voicenet.com)

FROM ME: “This is not the first response to mention meeting other blind people, those who are successful in dealing with their blindness in attitude, ability to function via alternatives etc. How do we/you determine who is successful and a good role model?”

**15. “I don't think there's any definite answer to this. Everybody's
different. My visions getting worse very gradually. I can't say that
puts me in a better, or worse, position than anyone else.”

Patricia Hubschman (New York USA)

**16. “If I had to go blind I am happy that it happen all at once. I have so many friends that are partials and are fighting their loss all the way and they are not happy campers. Don’t get me wrong, I think sight is one of the finer things in life, however going blind slow like some do, knowing it is coming is not pleasant. But bang, being blind, where it hits you and there is no in-between appears easier to take. But either way, its what you do with it that really counts. If you have blindness, it is part of you and fighting with yourself is not healthy, we all have to use all we have to make it with our best. Divide and conquer holds true from the individual to any army.”

Marvin Springer (USA)

**17. “To be perfectly honest I don't feel qualified to comment on this current
thought provoker. I am been vi since three months of age from ROP. I
thought it was comical how the woman thought the two men in the story should know each other just because of their disability. That happens to me a lot people think I know someone just because he/she is vi.

I also thought it was interesting the rehab center apparently had a travel instructor rather than an O&M instructor. For me I prefer an O&M instructor versus a travel instructor. However I don't want to go into that because that isn't the issue at hand. I also wonder what about the option of having a rehab teacher to work with these people instead of going to a rehab center. I think everyone's needs are individual but I often think that sighted people assume if you go blind later in life you will automatically go to a rehab training center.

I hope this makes sense.”

Lisa Lamoni (Iowa USA)

**18. “I, for one, share these two blind men's probable indignation that the well-meaning woman in the mall should assume that they might know each other, unless the encounter happens to be taking place in a very small town. A very, very small town. What are these sighted people thinking, I often ask myself. Thank you for bringing up another of those small but sometimes infuriating examples of how the sighted world lumps us all together.”

Joel Deutsch (RPlist)

FROM ME: “So what is this phenomena of ‘all blind guys will know one another?’ A second interesting one is, and I’ve had this one happen to me too, is that people will mistake you for another blind person; like we all look alike type of thing. So what is at the bottom of this one?”

**19. “Fast or born blind is better then slow or loosing it later in life. This has been my experience. Someone that has had normal vision has a lot of adapting to deal with. There will be different stages of vision loss etc. Some one that is born blind just learns to live with what nature gave them. I have only known one person that lost their vision over night so am not sure how this would affect people. The person I do know adapted to his vision loss rather well. A little to well if that is possible.”

Charlie Web(Blindfam)

**20. “The point is what do you do when blindness comes into your lives! Blindness is not to be read or understood to mean total blindness, it is when ever vision is lost, at any degree of loss or blindness, because it brings functional changes and associated emotional and social and eventually economical and political impacts too.

What I think is the larger message in this PROVOKER is for the person who starts losing vision in a slow manner. Say it begins with not being able to thread a needle. There is a functional problem, a small one but it effects that ability, that need to fix something of yours and if you don’t learn the alternative to continue to be able to do it for yourself, then you lose that small piece of independence. It never feels good to give up ability and independence and have to go with out or ask another for help. Another example is that person who starts experiencing difficulties in night travel. Think of the mistakes they will make, the accidents that will happen, the embarrassment, the pain and eventually the giving up of going any where after dark. This will bring restrictions into a persons life that will effect school, work, socialization, etc. But again, there is a workable solution, one that will most times eliminate the restriction. There is the long white cane, there is alternative transportation; sometimes you have to move to where you can get a car pool or bus or train or walk. Once again, there are usually common sense non-visual methods that will work for these initial problems and more of them for the progressive nature of this scenario.

Restating my initial thesis, I think the message underlying this PROVOKER is more for the person who goes blind slow. We in life who are blind or visually impaired if you will, know many others like us and we hear the stories, see the impact of blindness and see how others deal with it and can recognize when it is handled wisely or not. Too many people who start losing vision in a slow manner do not do the wise thing. They hold off on learning non-visual alternatives; even after trying low vision, there is too often a reluctance to take the next step. I will also say that it isn’t always all their fault in this mind set, it is too many times presented and reinforced by the fields of medicine, by vision teachers in public schools, by counselors and teachers at school for the blind, by counselors and teachers working for rehabilitation agencies, and by the general public. This ‘sight is best or sight to the max’ is the continuing state of how most societies still view the condition of blindness. But alas, there is light at the end of the tunnel, a beacon calling us to safety, to changing what it means to be blind and within this process you can see how those whom it effects kicking a screaming and resisting, much like will happen when any long held mind set is being challenged and changed.”

FROM ME: “This individual has requested to remain unnamed. So what about the thought of learning both methods, low-vision and non-visual alternatives at the same time? Shooting for the best in plan A and plan B; when vision is sufficient use it, but have the option there and ready to carry on in a non-visual mode. Be the best you can be.”

**21. ” These people who ask condescending questions are a sore point with me. "go
blind quickly or slowly I'd simply say I know about my own situation not
someone else's." I don't answer stupid questions nor do I explain how I
manage we do not owe them anything as they have decided you are a second
class citizen already or they wouldn't invade your privacy. I live in a
wheelchair so I hear "your lucky you get to sit down to do your shopping. while we have to walk!"

Diane Dobson (Victoria, British Columbia(

**22. “Going blind sucks big time. That said- I'll move on to the topic. No one can answer this; experiences vary just as say-dying with cancer.
As a mid-life career professional, I was appalled at the ignorance and lack of research into my particular problem. Being in your mid 40s-50s is no time to go blind because services are so limited for that age group.

Blind since birth- services have been available through the school system for at least 40 years now; programs continue through life because advocates are there to make sure all the proper decisions are made so these folks get every penny available for services, if possible.

Blind after 65- activities and services are available for retired folks and they can earn as much money as possible without losing any benefits. The studies I've researched indicate that that in-between stage when you've been financially independent with established lifestyle is the worst time to lose sight. You're not accustomed to being treated like a 3rd class citizen and you've reported your financial situation honestly and you're told that you don't qualify because you own a house, car, have a retirement plan, etc. So, then you descend into the hell of no insurance, no house, etc.

Over all- going blind sucks - no matter which way you cut it.
I, personally, had to step up to the plate swinging and deal with really stupid people and the "do-gooders" and the "babied know-it-alls" whose parents had set them up to meet the poverty standards to qualify for benefits and yet they lived very well.”

(Please withhold my name or do not publish my response.)

**23. “I've been reading the various responses to this THOUGHT PROVOKER with interest. I'm currently 18, finishing off my last year of high school.

I was born with occulotaneous (sp?) albinism, i.e. no pigment in my hair, skin, or eyes. This resulted in vision around the 20/400 range. This was good enough that I could, if I had to, make due with regular print (though I preferred large print). I also did a lot of bike riding, usually with my brother, and ironically, was generally more observant than him. I guess I paid a lot closer attention to everything that was going on... In any event, that vision was not supposed to change.

On the 31st of October 2000, however, it did. Over the week that followed, my vision dropped right off, to levels which are supposedly
unmeasurable. (I'd guess around 20/1200 or lower.) The problem is that I cannot focus on anything, so although I can see where things are, I can't get much detail out of it. To add to it, I'm very, very light sensitive, and though it isn't necessarily painful, glare on a sunny day can put me in a world of almost complete white -- like a fog, if you will. (For what it's worth, the only possible suggestion for the cause was a burst blood vessel in the optic nerves, but even the doctors didn't really seem to believe that.)

Now, my vision was supposed to be 100% stable -- we had always been told it would never get worse, as a result of the albinism. I had had some O&M training back in grades 7 and 8, but nothing useful as far as cane travel was concerned. I had not, however, looked into any 'alternate' techniques for doing any of the daily things, and certainly did not have any knowledge of Braille.

To be honest, I never did really 'deny' it. The first couple days, I hoped that it would come back (obviously), but after the first week I figured I had two choices: wait for God knows how long and see, or start learning new things. That way, if it didn't come back, I wouldn't have wasted that time -- and if it did, well fine, you can never know too much, right? Unfortunately, the school didn't quite agree with this, and (tried) to suggest that I take it easy, and come back in April 2001. You know, I didn't get depressed about the loss of sight itself: but the thought of sitting around doing nothing for 6 months did it. (For what it's worth, I went back in December 2000, finished 2 of the 4 courses I was working on, and 2 more in the second semester. I'm now "comfortable" with Braille and Nemeth (i.e. I can read/write it, if not at 200 words a minute), and use a laptop in class.)

And they said it couldn't be done.''

So, to answer the question at hand, I think in my case, losing it all (or most of it) at once was easy to handle. I never did 'deny' it, nor get really 'upset' by it. I figured it was a nuisance, but in the long run it wouldn't be a huge problem... Had it been more gradual though, I think I'd be more frustrated, never knowing when the next drop was coming, and never really getting fully comfortable.

Those are just my thoughts... For me, this, I think, was much easier than the alternative. But it really depends on how the person handles shocks like that...”

Anthony Tibbs (Ottawa, Ontario, Canada)

FROM ME: “Be the on-set fast or slow or might it come back… there is a triad of possibilities for you. But what I like is the attitude that he had some functional problems and wasn’t going to wait around until they many or may not disappear and so he got busy and learned the necessary alternatives to get moving again. Think about it, about him or yourself if waiting was the option chosen. How might you have felt during the time of waiting? Would you have been able to function at what ever it was you had been involved in while you were waiting? How much time would you have lost? Could you see that time spent as something other than lost; is lost a fair word/concept here?”

**24. I think it is very interesting to hear the comments of people who are going blind gradually. The individual who likened it to being tortured by hanging from a rope over a fiery bottomless pit with your hands and feet bound? Sounds like this individual could benefit from some non-sighted techniques training!

consider the individual who had lost his vision twice. As I read through his response, I was very surprised how he had gone through the process of vision loss once and gotten his sight back, but when he lost it for the second time, and was certain it was permanent, he still commented on that little sliver of vision that remained. Sounds like he could benefit from some non-sighted techniques training.

I lost my vision suddenly and completely. I did not have the opportunity to learn non-visual techniques until game time. Looking back I believe that this forced me to face the inevitable with less trepidation.

Now I am a counselor and work with individuals of both persuasion. I find that those individuals who decide to strap on a blindfold and learn how to function with no sight make the transition much more easily than those who fight it tooth and nail every step of the way. I was saddened by a story of a family who had a 7-year-old little boy who had already gone through 21 eye surgeries. the end result was inucleation and the inevitable total blindness. How
difficult it must have been for that young child to be put through the pain of so much surgery just because his parents would not accept that their child was to be blind.
The moral of the story is slowly or quickly? Both are equally as bad. both require the acquisition of a set of skills. the minute someone is diagnosed with a progressive eye condition, they must consider learning how to do some things under blindfold. You don't have to learn how to use your residual vision. That is natural. you have to learn how to function without vision.”

David Ondich (Dallas, Texas USA)

FROM ME: “This counselor shares his professional experience with us and one statement he makes really struck home with me:
‘…I find that those individuals who decide to strap on a blindfold and learn how to function with no sight make the transition much more easily than those who fight it tooth and nail every step of the way….’

Recall that I to am a VR counselor and just had my 28th anniversary working for the Nebraska Commission for the Blind and Visually Impaired. And what he wrote is right on the money! I’ve seen it time and time again. So my question is, what can you tell us, we who are here to help people go through this transition in life, from sightedness to blindness, will this get any easier for us, helping people like you to go through that change? What will help it?”

**25. I have some vision and (in my aggrandized opinion) pretty good blindness skills so I had to jump into this one. I chose sleep shade training because I wanted my low vision to become an asset instead of the liability it was before. Right now, it is fairly stable but if it begins to change, I hope I lose it all at once instead of fluctuating the way some others have done.

One of my Friends has suffered with blindness for many years. I mean suffered! She never did manage to turn it into a nuisance or a minor annoyance the way most of my other friends had done. She went to a training center that offered sleep shades as an option but not very seriously. She relied so much
on her vision that when she came home, I was forced to wonder how anything had changed for her. I attended the Colorado Center for the Blind. Sleep shades weren't an option, they were the core curriculum. I really wanted blindness to be a characteristic for me, not unlike being a woman. Even those nasty, sweaty sleep shades proved to be a profitable hobby as I later earned a National Orientation and Mobility Certification and a Master's in that field of
study. Everyone in my circle of friends knew of my interest and those who hadn't been to a center like mine began seeking me out. I was thrilled! When I didn't know what to tell them, I found other center graduates to help out.
One day the friend in question called me up. She had had yet another eye surgery and had come home totally blind. She was scared to go to class. She said the local O. & M. guy from the agency had worked with her but she was still unsure of herself. It was a cold, icy January but I got her and we went to the campus. We walked and walked and walked. I talked about landmarks and echoes and anything else I could sink into her. There is so much that I
know now as a professional that I didn't know then. I can only attribute her success to an indomitable spirit which, for a brief semester, soared on the wings of freedom. By the end of that semester, she was a damn fine traveler and I was so proud of her.
Then there was another operation and a little vision returned. Suddenly my friend was walking slower, paying less attention to her cane and stumbling over things the cane would once have caught for her. Her philosophy seemed to be vision at all cost. Blindness skills were fine when you had no choice but when a little light, shadow and color creep in, who needs it. She needed it. I need it and so many of us do so well with blindness skills in spite of
our vision. Not that I'm not glad to have it, it comes in handy. But to be that dependent on something as unreliable as eyesight, that would be the real tragedy.

To this day, that friend's abilities fluctuate with her vision but I will never forget that semester when she was strong and free... and flew with the rest of us, both blind and sighted.”

Jane (Omaha Nebraska USA)

FROM ME: “Here is a question/thought- thinking of the friend talked about in this response, could you say that she ended up as ‘an inferior sighted person?’ Can a person hold on to sight too long that it diminishes a persons ability to compete, to function fully to the best of their true overall potential?

Or, here is yet another way to view it- ” can hanging on to sight at all costs, how costly can it get, who ends up paying and how?”

**26. “I can't say which is better going blind fast or slow. I am going blind
slowly. There are times when I wish my vision would go completely so that
I could totally adjust to it. I know that I will miss what vision I still
have as I miss the vision that I use to have. I use to be able to read
regular print with glasses and travel without a mobility aid. About 15
years ago when my vision first started to change, I learned Braille through
the Hadley School. Shortly thereafter, I took orientation and mobility
training. I am so glad that I didn't wait to get these skills until I had
to. I felt that if I didn't have these skills that I would become very
isolated and that really frightened me. I have been legally blind since
birth due to R O P but was considered a high partial until about 10 years
ago. I had no exposure to anyone who was blind until I was an adult. I
was able to see that a totally blind person was able to function very well
and that blindness is a royal pain but not the end of the world. I hope
that my vision will not go away completely but am realistic that it
probably will as I go through a change about every 4 months.”

Vivian Conger (Walla Walla, Washington, USA
topaz@valint.net)

**28. “I have a brother who is going blind slow. He is fighting it all the way! On one hand I don’t blame him, who wants to be blind and if you could put it off… But by his fighting it he isn’t putting it off, just his adjustment to it. So I wish he’d go blind fast, it would be better for him.”

Mary P. (USA)

**29. “>>"Bet we can guess what will be her next round of
questions! 'Which is easier or harder or.'"

I'd say it's whichever YOU are having to deal with.
”

Diane Holms (RPlist)

**30. “I know so many partially sighted people that are so blind that they really do not function well sighted. Most of them do not believe in using non-visual techniques like a white cane or Braille or a needle threader or speech with the computer. They struggle with the low vision methods they have, trying to be sighted and they wonder why people view them as being McGoo like. Now I know some of them will not get blinder and eventually be forced to learn blindness skills and only use them. But I especially feel bad for all those of them who will go all the way blind and aren’t using this time to prepare. And oh yes, I do feel sorry for those of them who will remain partial and refuse to learn and use a strong mix of visual and non-visual methods to be the strongest they can, but that is their choice. I do know that there are some of these people who do get the right counseling and encouragement of other people like them that have learned all ways of functioning, they are the lucky ones, the smart ones. I think it is not always their fault for not wanting to learn the non-visual methods, because maybe they had a parent or teacher or counselor who thought sight was best, after all, most of society thinks that way. I hope this thought PROVOKER will help change some of their minds.”

Marcy Brink (USA)

**31. ” Well, this is a story full of insight for someone who can see. Is that how it really is? Your rehab instructor just lets you navigate the mall with nothing but a long cane to get you through the maze of people and a myriad of stores? How scary. Surely, a person must have some sight in at least one eye, otherwise I would imagine one would be hitting more than one person on the ankles with that cane. Of course, any one who sees a person approaching with a white
cane knows that they must get out of the way of the blind person, especially in a crowded mall. It would be like Moses parting the Red Sea. As a person who lost partial vision gradually and then was recovered by surgery, I can't give an experience of losing vision either quickly or gradually, as most of the contributors can. I only know that on this side of the fence, if given a choice, I would much rather lose it gradually. That way, there would be
time to prepare and learn to get around, but at the end of the lesson when the blindfold is removed one can still rejoice that their sight is still there, and value it all that much more, even as it diminishes. This is how I would handle it, but I suppose if the person is not inclined to seek out the help they need to adjust, then it wouldn't matter how the blindness came about, because they've already resigned themselves to less fulfilling lives. None
of us, however, are really given choices in how these things happen, just how we choose to deal with them.”

Kay (Florida USA)

FROM ME: “It’s great to have a sighted person tell it as they feel about blindness and it’s okay to find that they are at one of the initial stages of understanding and/or acceptance of the human potential to cope with blindness. After all, she is here and willing to read what it is we who are there have to say about it and how about her last sentence- ‘….None
of us, however, are really given choices in how these things happen, just how we choose to deal with them….’ She does speak of wanting to take instruction in alternatives. How about what she meant in this phrase when referring to those who might choose to not take rehab- ‘…they've already resigned themselves to less fulfilling lives…’”

**32. “I am a congenitally blind person who has served for 5 years as a rehab teacher, worked in the Adaptive Technology industry for 17 years, and have lived
49 years as a totally blind person. I can't, honest speak to the conundrum faced by those joining our club adventitiously, but I have a wealth of observation and thought
pertaining to this issue. As to the person who asserted that the effective use of residual vision is a "natural process", this is entirely a false perception/claim--based
more upon ideology than reality. Those born with and raised with functional vision have no idea of how to effectively use a damaged visual sensorum. That should
be obvious in the lack of efficacy with which they use such vision. They are used to being able to rely on what the see as being a full representation of their environment,
whereas when their vision has deteriorated, they aren't getting that full data set, yet they haven't come to distrust the input they are getting, and don't know
that they may have to look at a situation twice or more, and interpolate what they are seeing--perhaps--if they are wise and sufficiently trained--melding the visual input with
other aspects of their available sensorum... There is a whole sub-field of Visual Disabilities Education and Practice dealing with "Visual Effectiveness" training.

Next, which is better depends upon the value one chooses to place on vision versus their other sensory modalities. That is, if Vision is idolitrized as
the only, or most valid/important sensory modality, then, the person lets their self-definition and perception of their efficacy of a human being rest upon the availability
of vision. If it's gone, and vision is perceived to be an indication of full personhood, then, the person with impaired vision makes them feel dehumanized. If, on the other
hand, one values their residual sensorum--realizing that they have 80% of their sensorum available--when without vision--then, if not a welcome opportunity, one can
consider their vision loss an opportunity to explore the utility and aesthetics of their hitherto uninvestigated armory of senses...”

Nick Dotson (Pensacola, Florida USA)

FROM ME: “Allot to sift through in this response. Nick refers to a sighted person seeing themselves as appearing to have/hold full person-hood if they have their sight and that type of person, mind-set would have a person losing vision as feeling dehumanized. Well… this got me to thinking, wondering, feeling out if there is a parallel that can be use here to help with understanding how some of us approach or just feel as we go through a major adjustment like going blind, fast or slow. For example, we speak of a person with sight as being a ‘sighted person,’ and a person without sight as being a ‘blind person.’ So is there something in this process of changing of being one type of person to another that could help us? Like going from being a ‘young person’ to being an ‘old person?’ Or, from being a ‘single person’ to being a ‘married person?’ Or, a ‘non-religious person’ to being a ‘religious person?”

Then I wonder, how much of any difficulty in transition is due to the physical limitations associated with what you are changing to?”

**33. “This is an interesting topic and I must agree with the
person that said it depends on the person and their situation. My situation is going blind slow. I may never be totally blind or it may happen someday, I just don't know and no doctor can tell me. I am in a
situation where there isn't much known about my condition (I was born with aniridia and will never see any better than 20/200). I am forced to go by what little information I have and the very few people I
have known with this same condition. Part of my
situation was having slow progressing cataracts when I was born. We were told by the time I was 20 they would have to be removed. When I was in 10th grade they had gotten bad enough I made the decision that
they should be removed from my right eye, which had always been my good eye. It was important to my mom that I made the decision because there was a fairly big risk. They could have been removed and I would
have gotten no sight back, the doctor just couldn't be
100% for sure. I agreed to the surgery because I
figured at that point I had started some cane and mobility training because I virtually could see nothing. I figured what did I have to lose and I knew I had something to gain. I will never forget when
they took the patch off and I could see something and
to me it was a miracle. I went from a best on a very
good day of 20/400 to 20/200. I was not as fortunate
when a year later the cataracts were removed from my left eye but I did gain a tad bit back. Although most
of the sharpness of detail has left again I still can
see on a good day 20/200 in my right eye, my left eye
varies but I think it was last 20/300.

I feel very blessed that I was able to get that sight back for a few years but I am also a realist. As I
said I know that it could leave again but I am prepared for that and it doesn't scare me. If it were to leave fast I feel that I am the type of person and have the skills that I would be fine. I am thankful
for the good days I have even when sometimes they are
few. When the day comes and as a song I know says
"when it's gone, it's just gone" I'll be ready whether
it is fast or slow. I know the risks and possibilities and I am at peace. I guess I think that is what can help whether you lose your sight fast or slow is if you are at peace with not having your
sight.”

Wendalyn (Nebraska USA)

**34. Is one really easier than another? Depends on whom you ask. What really matters most is the response to the question. I get the feeling that the person, though he said he didn't mind talking about it, may have minded after all: Uh Oh, here comes the 'which is easier' question. Maybe we do get tired of answering questions that have been asked a million times, and I as a sighted spouse get asked a great many. A biggie is usually said in an aside: whether I've REALLY done everything there is to restore Bob's vision (do I look like a doctor?). The important thing for me to keep in mind is that even though I've heard the questions many times, the questioner wants an answer. I'd rather have questions than (God forbid!) have people develop preconceived notions that often may be all wrong. I try to listen to the question as if it were the first time I am hearing it, and I try to answer in the same spirit.”

Carolyn Gold (Clearwater, Florida USA
cg.two@verizon.net)

**36. ” My first comment is more of a tangent to the main story but picks up on a theme made by one or two other contributors; that being the common assumption that all blind people know one another. I would like to take this a little bit further. I am presently employed in a 500+ person computer department of a large national corporation. At present, there are 3 visually impaired workers; myself
and two others. All of us are functionally totally blind; two of us use canes and the third uses a dog. None of the 3 of us work together; nor do we even sit any where near by the others. The interesting thing that I have noticed is that, to our sighted co-workers, all of the 3 of us seem to look the same. A week doesn't go by that I don't
get asked where my beautiful guide dog is. I don't own a guide dog and never have - I'm a cane traveler (and a fairly good one at that). People just seem to have trouble differentiating between the 3 of us. Apparently, they seem not to have noticed that there is more than one of us. What this tells me is that, to many, people don't see past the blindness; our blindness is the most defining characteristic about us. When I get mistakenly
recognized for one of the other two blind staffers, I pleasantly correct the person and leave it at that. But, amongst the 3 of us, we do have a good chuckle about our interchangeable identities. Of course, there are many who do know us as individuals and do not mistake one for the other. It is simply too bad that, to many, it would seem that the
emphasis and focus is on the disability characteristic rather than the person as a whole individual.

On the main topic of discussion, my personal experience has been a gradual loss of sight over the past 40 years due to glaucoma. Fortunately, it seems to have been that, every time I suffered a major loss of sight, there was some technology to help out. For example, when I lost the ability to read small print (at very close range), large print was there. When I lost the ability to read large print, CCTV
systems were there. When I lost the ability to use CCTVs, screen reader software was there. I do know Braille albeit only at grade one and very slowly. I use it for labeling things around the house like spices etc). Had I lost my sight more rapidly, I would have been forced to learn Braille proficiently and would be grateful for that skill now. But, as it is, I have technology to help out; talking
computers, digital voice recorders, etc. Knowing Braille would be a definite asset, but I don't have the patience or motivation to do so at this point;
maybe I will in the future.

I have often reflected on whether loosing one's sight quickly or slowly is better, but as many have commented, you don't get a choice. Each has its plusses and minuses. But, really, as highlighted in every THOUGHT PROVOKER, the single most important characteristic in my mind is attitude.

Having said the above, I must share a recent personal story. This past autumn, my doctor recommended a procedure to help reduce the pressure associated with glaucoma. He was reasonably confident of success and that my vision, poor as it is (light and colour perception only at this time), would not be adversely effected. But, as always, there was a risk of complications. I did end of going through the procedure, which I am pleased to say was successful. But, having to face the possibility of loosing my very little bit of remaining sight did put me through a lot of angst. As one of my friends put it, "a little is an infinite more than none."

Now, as I said above, I have been dealing with blindness all my life and perceive myself to be rather successful at it. I am mobile, employed, physically active and am quite independent. never the less, facing the possible loss of my remaining vision was very, very distressing. I think that one of the reasons it was so difficult was that I did have a say in the decision -- whether or not to go forward with the procedure. If I had
no choice and simply lost my vision "like that", then I think that I would have suffered initially, but I would have gotten over it quite quickly as I have all the needed skills and have been sightless on a number of previous occasions for short periods of times and have coped well. Yet, having a say in the matter was difficult.

In conclusion, perhaps I will reiterate the point that I made above; it isn't the choice that is important; rather the attitude that you have in dealing with it.

Continuing to enjoy the discussions on this and other topics.”

Peter Quaiattini ) Alberta Canada quaiattp@cadvision.com(

**37. “Oddly enough, my wife and I had a discussion that connects to this subject only a few months before a major vision loss heralded my descent into the darkness of the pit of blackness. Actually, it is nowhere near that
dramatic, I was just wondering what it would be like to write about
blindness in the same way as many sighted people, pardon the pun, see it.

Our discussion was about which would be the most inconvenient disability - deafness or blindness? I thought deafness, because you can still drive and work in many occupations without a whole lot of hassle. She responded rather strongly in favor of blindness, since with that situation one could still communicate without significant restriction. With deafness, sign language must be learned to communicate with a significant number of deaf people, not everyone can lip-read to understand hearing people, and for most other, you
simply don't get past the most basic aspects of communication. I agreed with her after some thought, and less than a year later, I was totally blind in my left eye due to an experimental operation that I did not know was experimental, and losing it faster than I would like in my right.

Now many people think that I lost it a while ago, but I've come to the
conclusion that I have no preference at all. There are times of incredible frustration with advancing total blindness when I just pray that God would just take the rest and have done with it. The hassles of dealing with blindness, along with the fear of what it entails just snowball at that point and I want to get it over with. Then some nights when I am out with my guide dog Gage and all I can see are things that are brightly lit and then I hear a noise and almost reflexively shout in fear because it sounded like someone coming up to me suddenly and then it was nothing but I'm still shaking and holding my dog and the hassles of dealing with blindness, along with the fear of what it entails just snowball at that point and . . .

Those are the times are when slow is the way to go. SO I end up getting into this love-hate relationship with my vision. Do I want to keep it? Yessiree, Bob, even if your name isn't Bob. Then there are times when reading becomes a hassle and I realize that Braille would be faster and better, but I end up holding onto that last remaining bit of vision like a life preserver off the Titanic and my Braille grinds to a halt in favor of blurry print.

Actually, it isn't like this most of the time. God is a strong O & M point, but the times of stress can be a hassle.

Perhaps a good thought provoker would be "Snowball Syndrome" - when
everything piles up and a shovel is hard to find when you can't see.”

Gary Drennan (Valparaiso , Indiana USA drennanat@netnitco.net(

**38. “I think that the women in the story had very little manners and obviously did not know very much about sensitivity issues, or common courtesy.

I have had to deal with many people who are a lot like her. Almost everyday I get asked what is wrong with my right eye, (it is deformed as a result of
an operation I had when I was a baby, and I have no sight in it.) I have to go through the explanation for the 100th time, and the fully sighted person
asks me questions that don't make any sense like, "did it hurt?" -how could I know if it hurt, I was a baby! It is my belief that sighted people have a
very very poor idea of how to treat blind and visually impaired people, they should understand that being asked "what's wrong with your eye?" or "why are you blind in one eye," or whatever they decide to ask, is very frustrating to have to respond to, and that it is none of their business what is wrong with my eye or why I'm blind in one eye. Then they get angry when I don't tell them what they want to know, as though it was as simple a question as "where
did you get your shirt?" I have yet to meet someone in my life who is totally blind or who is partially sighted, but when I do, I will not ask them the
"obvious questions," and ask them "abstract" ones instead.”

Sasha Gagarin (Westerly, Rhode Island USA)

**39. “In response to a post in Update one: I remember in the school for the blind that partials were taught Braille, but hated and resented it, and a lot of them went to another local school called "sight-saving" school, in which they could still pretend they were "sighted"! I now find this part of the problem of acceptance. There is entirely too much emphasis placed on "sight" in our world. Sight seems to be the ultimate sense to have!! Why heavens, you can't read or drive!!---That's terrible!!! So I think that these people in transition, are being told that eye-sight is super-important to getting by in there lives and that loss of it means "limitation," and "struggle," and "different!" Even Eye Doctors are weird about treating the totally blind! The attitude seems to be "I can't help you, so Why are you here?"

I think that society always makes the transition from sighted to blind
harder than it needs to be and we, whom this effects reflect what
society does!!!”

Phyllis Stevens (Johnson City, Tennessee USA).

FROM ME: “How much does good old human curiosity play into this THOUGHT PROVOKER? Good or bad?”

**40. “As in the PROVOKER I lost my sight in a car accident in 1998 presenting me with the exact notion of here one minute ...gone the next!! At the age of 25, losing your sight seems momentously more life changing than the simple loss of a sensory modality. I would be surprised if there was not a person who had not encountered the question "Which is worse...?", as people are interested in those things they see as interesting or not A typical, whether they be "normal" or possess an impairment/disability or personal trait different to their own. Great time has been spent trying to determine where, or if, the transition exists between a sighted person to a blind person. Like many topics which generate a wealth of discussion this particular aspect of this discussion buries what I believe to be the most important point.....Why is it that we, collectively
as a species, look to differentiate between one another by our apparent differences.
Robert wrote: we speak of a person with sight as being a ‘sighted person,’ and a person without sight as being a ‘blind person.’ So is there something in
this process of changing of being one type of person to another that could help us? Like going from being a ‘young person’ to being an ‘old person?’ Or,
from being a ‘single person’ to being a ‘married person.... finding a common thread" Person" . For is this not what we all wish to be recognized as....??
I believe that this question could, and more than likely is, answered in as many different ways as their are blind or sight impaired people in this magnificent
world of ours...we are all different people with different beliefs, core values, mental strengths etc leading us all, regardless of possible identical
situations or circumstances, along often very different life paths.
Which is worse........which ever has happened to the individual.”

Logan McMullen (New Zealand)

**41. “In response to the topic of going blind fast or slow, I think either way is devastating! In my case, it has been a long, slow process. The last 12 years
of my life has been a series of plateaus. Just when I thought I had everything somewhat under control, I'd lose more sight and have to start all over again! It took more than 5 years to convince the doctors that there really was something wrong with my eyes. It seems that rod/cone dystrophy is extremely hard to diagnose and they thought my problem was psychological.
If I had lost my sight suddenly, I truly don't know how I would have handled it. Probably the same way I did with gradual loss. My way! It may not be
the right way, but its the only one I know.
I have no clue as to where it is all going to end. I still have a little sight left and I am thankful for that!

I honestly admire the people who have responded to the Thought Provoker topics. I think we have all experienced the same emotions, frustration, stress,
sheer terror, and deep anger. We have all dealt with blindness in our own unique way and I guess the bottom line is......DON'T GIVE UP!!”

Pat Wagner (Portage, Michigan USA
plw@toast.net)

**42. “These last responses made me wonder how much of people's reactions to blindness are influenced by what they accept as a definition of blindness. Since
I lost my vision shortly after turning eight, it has been more than forty years ago. My identity of who I was didn't change much. I was still the oldest
child with responsibility for active younger siblings, I was quick in school, so was confident in my intelligence. I was physically active, climbing trees,
jumping rope and loved my swing in the backyard pecan tree. None of that really changed. The lady who was surprised about the man walking through the
mall alone and imagined that people jumped out of his way didn't grasp how much we use our hearing and what is called facial vision or that ability to
use other cues like changes in air flow, temperature etc. to tell us how close we are to people and objects. I think acceptance of who we are and a willingness
to explore and utilize all our gifts to live full and interesting lives is what makes the difference between the stereotypic shuffling poor blind man and
the person who just happens to be blind as a part of the whole package. Fast or slow doesn't really have much to do with it in the long run. It is how
you handle it that matters.”

DeAnna Noriega (Colorado USA quietwater@codenet.net)

FROM ME: “So what about this, ‘…These last responses made me wonder how much of people's reactions to blindness are influenced by what they accept as a definition of blindness…’ I wondering what to do with it? Like- Is that just the way it is? If it is not satisfactory, dealing with the blindness thing, can we do something about it; for the blind and/or with the sighted? What could we do? …”

**43. Like many respondents have said, whether going blind fast or slow is worse or better really depends on the individual's attitude towards going blind
in general. Unfortunately, there are still many people to this day who see going blind as a detriment and contributing to looking ugly--to be sighted
is to be pretty whereas to be blind is to be ugly. Many people also still view the idea of going blind as losing control of their own lives, so the difference
in adjustment, whether going blind fast or slow, would be the same to them--stressful, frustrating, a living nightmare, etc. To people who strongly attach
beauty or having control of their own lives to being able to see, the same level of frustration and stress would be the same regardless of what age they
are. I say this because the notion of blindness as a deformity with many physical limitations, thus contributing to not looking pretty, has been driven
home for many years socially--through the media and/or based on the stereotypes people have personally seen blind people exhibit in public. These notions,
then, are passed down through the generations, which perpetuate the lingering shuttering thoughts people have about blindness or going blind. As we all
know, though, the only physical limitation blind people have is that they cannot see. Sure, we may not be able to drive, but we can take the bus or cab
or hire someone to drive us. Thus, we can still get to where we need to go, do what we need to do, etc. with the use of other devices and methods.
As for whether I would rather go blind fast or slow, I would rather slowly lose my sight so that I have the chance to prepare. I say this from the
standpoint of someone who has light perception and can see some colors but cannot read any size of print or see shapes. For the first eight years of my
life, I thought I was able to see like everyone else. Even when I started learning how to read Braille at a school for the blind in the Philippines (I'm
adopted), I thought that I was just learning a different kind of reading that everyone else knew but not everyone used. It wasn't until I came here to
the States and expressed my enthusiasm of being able to drive one day that my adopted mother told me the real truth--that I would never be able to drive
because I couldn't see what I needed to see to be able to navigate the roads and the traffic, that I was blind. To make a long story short, that made
me feel like my whole world had shattered to bits, but with the help of being socialized with other blind people at social activities and training programs
for children, I soon learned to adjust and, over time, accept my blindness. In the whole adjustment and acceptance process, I was also told by eye doctors
that, due to my eye condition of glaucoma, there was a likelihood that what little vision I had left would deteriorate over a long period of time. Being
that I was already reading Braille and receiving travel skills, I wasn't too worried about it. It wasn't until I worked during one summer at Blind Inc.
and got the chance to travel around under sleep shades just for fun that I realized how much I relied heavily on my sight to look for large landmarks--trees,
buildings, direction of the sun to figure out what direction I was traveling in, etc. That's when the eye doctor's words that I heard at ten years old
played back in my head. Ever since working there that summer, I've learned to rely just as heavily on my auditory cues as I do on my little sight as a
back-up. That little bit of preparation that summer has come in handy over the fifteen years of now not being able to see colors as clearly or as many
colors at all as I used to be able to as well as not being able to tell anymore in most cases whether a light is on in a room or not. I'm not saying,
of course, that waking up one day to find that I cannot see anything won't scare me or make me start imagining the little things I once was able to see--the
sunshine--because it would. However, the degree that it would scare me and the whole adjustment process wouldn't be as bad as it would be if I was able
to see everything or had not been warned by my eye doctors of the prognosis. I'm quite sure that, if I had not been given any kind of warning or the doctors
thought that my eyesight would remain as it was or is, then I would not have given trying to walk around under sleep shades a thought. I would've veered
away from such suggestions as far as I could possibly go. But, with remembering what the doctor told me, I made the initiative to try it out. Sure, losing
all your sight in one shot might be easier for some in that you have no choice than to learn nonvisual techniques and keep with those techniques with no
option of being able to rely on residual vision, but there's no chance to prepare at your own pace then. Such a fast pace of training due to losing my
sight suddenly would be much harder for me. Sudden changes have always been hard for me to deal with. If I was to lose my remaining sight in one shot,
however, I would have no choice than to either sink or swim. I would choose to swim, though, so as to get on with accomplishing what I need/want to get
done in life. Sitting still and doing nothing all because of thinking that there was nothing I could do without sight would drive me more nuts than knowing
that I would never regain the sight I lost. On the other hand, my husband, John, feels differently than I do.
Before I sat down to respond to this provoker, I asked him his view on this, being that he's slowly losing his sight due to diabetic cataracts. He
says that he would rather lose all his sight all at once so as to get the whole sight loss process over and done with. Not only would he have no other
choice than to learn alternative techniques with no way of going back to relying on any residual sight to read or find his way, but the Minnesota criteria
for being able to receive all services for the blind--cane skills training, Braille courses, and other kinds of rehab training for the blind--requires
that you don't have anymore correctable vision left. As it is, the slow process of losing his sight leaves him with getting newer glasses every year that
grow thicker as each year goes by, the distance that he can see decreasing, many headaches as his eyes adjust to the light, or lack there of, in the room,
and not being able to qualify for all the services I feel he really should be receiving before he loses all his sight altogether. In talking about the
one time he lost his glasses out in our backyard or the other time his glasses broke when he fell, he didn't know what to do as far as trying to find them
or trying to get around because he doesn't have a long white cane of his own, nor does he have the training to use nonvisual techniques low partials or
totally blind people have. Moreover, being able to see little lines on the screen without his glasses but not being able to see the pictures or words
associated with the lines frustrated him because he couldn't see what he would've been able to see if his glasses hadn't broken. For him, to not be able
to see the screen at all and for that to happen immediately would be better. He would rather know for certain that he cannot have the carrot than to have
someone dangle the carrot in front of him just to see whether he would go after it or not when he might not be able to go after it.
In understanding John's point of view and reflecting on some of my personal experiences with relying on remaining vision, I think that hanging onto
your slowly deteriorating sight at all cost entails a price to pay, which is at the cost of the individual, themselves. If you still have sight that's
expected to deteriorate at some undetermined time, then you have the idea that you can take all the time in the world to prepare yourself for total blindness.
You have the time to put off learning how to use a cane, read Braille, use equipment with speech, or learn nonvisual techniques. People either choose
to do this because they don't want to believe that total blindness can come at any time between now and whenever, or they have a psychological feeling
that to not learn nonvisual techniques means they can stave off total blindness; thus, hang on to their sight for as long as they can. It gives them a
feeling of control. To learn nonvisual techniques, on the other hand, not only brings them closer to the reality, but the fear of the unknown is much
closer at hand and the fear of losing control is stronger. Nobody wants to lose control of their lives, but to many sighted people, going blind is just
that--losing control, looking ugly, and any other negative ideas associated to blindness or going blind. Moreover, people who have to use the long white
cane to travel but rely heavily on their vision while they disregard tactile and audible cues pay the price of misjudging steps and curbs, mistaking something
else to be a landmark, misjudging traffic, etc. I'm not saying that people with remaining vision should not be able to use the little sight they have
left, but, regardless of whether or not their little bit of sight is expected to deteriorate, they should know how to utilize their other senses and use
them just as much as they use the sight they do have. This way, they're not only using visual techniques, but they're also using nonvisual techniques
as well for things they cannot use their vision on or will, eventually, not be able to use their vision on. Sure, sighted people who have no warning ahead
of time that they will lose their sight can hang onto their sight and choose not to learn how to use nonvisual techniques, but those of us who have warning
do have the option to prepare and must take that time to prepare with adequate training.

Linda Minnesota USA

**44.
I graduated from college and like Bill, chose not to work in the blindness field. I did my field placement at an agency for the blind because they couldn't figure out where to put me for the second year of my social work career. I enjoyed that placement but decided that I didn't want to work with blind people because it was what people expected. But it took me 25 years to get in touch with my blindness and that only happened when I immersed myself in the blind community. I still work for a welfare organization but started a chapter of the National Federation of the Blind in my home town and became a lot more sympathetic and attuned myself to what blind people really need. I don't think that blind people should limit themselves to either working with the blind or working in another agency. But I think that somewhere along the line, you have to get in touch with who you really are.

Mary Jo Partyka USA