THOUGHT PROVOKER 62

Adjustment to Blindness

      “Hey Jack! How're you doing?”
“Okay.” I lied to my old friend, "Hope you are too." And I kept walking hoping he wouldn't keep talking. The emotional fog that enveloped and weighed me down was unfortunately, territory that was familiar to me. I knew I could say more, should say a lot more to my friend, but it would come out wrong, negative, and possibly hateful sounding. He didn't deserve any of it. (Sigh.) I don't feel like visiting, not today and who the heck knows about tomorrow. “And, who cares that I feel like being alone today!” I thought, heading to my home. If I could just get busy, I could push this fog back, at least to a more manageable distance.

     This being blind is hard some days. Getting around I can do, Braille isn't bad though I wish I were faster, I can use my kitchen again and I'm eating right, I can even do most of my gardening by myself…so, the functional part is doable. I know I'm better at it than most. Oh yeah, and that reminds me--another thing I hate is when a sighted person questions my ability. And they always to that, at least the new people I meet. Some days I can ignore the ignorance. I've adjusted to ignorance, most days I don’t even think about it. But.... well don’t dwell on it anymore. It's just one little grungy thing…but some days...

     Then there are all these people who think they know you, think you are the "Super-Blind" model poster boy for adjustment, the one for newly blinded people to wish they could be like. I mean, yeah, right! Some days I feel like I'm helping and it feels good; some days I just didn’t feel like being their idea of Mister Perfect. If they really knew me, they'd know I'm not Mr. mushmouth Rogers, with a cane instead of an old sweater for an accessory. Still, I admit, there are some days when I enjoy, what? Must be I just enjoy showing off, doing the “modeling” bit. No, I can't be that shallow. Think of those folks that said I'd really helped them; that kid might have suicided if we hadn't talked. That's what it's about. I'll have to try to remember that when I wish they’d leave me alone and I say, “Busy, sorry, won’t work out.”

     Moving on down the sidewalk, "the" question, the really big question that I’ve had forever, played across my consciousness again. “How am I doing with this blindness? Am I adjusted? What does a good adjustment look like? Are my feelings--these periods of up and down--normal? Do I need to do something here...?

RESPONSES
e-mail responses to newmanrl@cox.net

**1. Blindness is not the worst tragedy to befall someone. But it often is a pain
in the butt. If we didn't have some ups and downs we wouldn't be human or
truly adjusted in my opinion.

I too resent sometimes being a post boy for rehabilitation or of being a
"Super Blink" or even trying to be one whatever that is.

As in some things in life I excel in certain matters. Others come more
slowly to me. I too wish my Braille skills are better but ironically I've
helped out sighted RT candidates in the instruction of same.

Ironically I've run into O and M students who must work in blindfolds
ask," How do you do it?" Someday my skills are pretty good. Some days I get
snaggled up and lost just like half the students on this campus.

Does that get frustrating? Does it challenge my own sense of adjustment? You
bet it does some days.

I do think though that my own self doubts about adjustment get resolved when
I can utilize my strengths in communication and advocacy while working on
my deficiencies.

Is this what adjustment looks like?

Maybe it is three quarters adjustment. Maybe I'm just an average guy with an
insidious decline of eyesight due to RP who is just trying to do the best he
can do with all of my virtues and vices, strengths and weaknesses.

Darn I guess I'm adjusted after all. I don't know what that looks like
myself though. I do know what it feels like.

Joe Harcz ACB-L

**2. A couple of weeks ago, I had to address a group as part of a panel of so called successful blind people held at a low vision expo. Preparing for the event,
I tried to think of those things that had helped me achieve some of the goals I had set for myself throughout my life. Do I feel like a success? What
about this blindness issue, what do I really feel. The following poem was what came out of my cogitations.

Acceptance
By DeAnna (Quietwater) Noriega
See me, open your eyes and really look,
I was the child sitting alone on the stairs,
While other children played a ball game in the yard.
Because I couldn't see to play,
I learned to love books.
I was the young girl who washed her hair on Friday nights,
Because the boys who carried my heavy Braille books at school,
Never guessed I loved to dance and go to movies.
I was the young woman holding my new born infant,
With my heart full of wonder and joy,
While nurses talked about me as if I wasn't even there,
Speculating about how I could ever care for that child.
I was the young mother sitting alone in the school cafeteria,
Because the teacher didn't expect me to come to the Mother's Lunch,
And assigned my child to serve behind the counter.
I Tell you these things because I want you to understand,
I am not a disability,
I am a person like you.
I laugh, I cry, I sing and dance.
I cherish my friends and family.
I want to be a part of my community and my world.
I don't need your pity,
I only ask your acceptance,
I only need you to open your eyes and see me,
Not as a dysfunction but as a person.
A human being just like you.

What this all boils down too is that adjustment is a fluid thing. Most of the time I don't even think about it because it is a part of who I am, but everyone
has those days when society, circumstances or life in general insists on emphasizing its importance. When it happens to me, I usually try to remind myself
that no one has it all, we all have things in our lives that we wish were different, it's how we use what we have that matters, not the things we lack.

DeAnna (Quietwater) Noriega Colorado USA
quietwater@codenet.net

**3. This is a very interesting thought provoker. I see this type of consumer every day in my work. This person is taking advantage of rehab services and seems
to be adjusting pretty well. However, this person has to come to grips with stereotypes that we who have been blind from birth know all too well. As
he is learning he also has to educate his friends and relatives about the capabilities of the blind. That is a lot of pressure on the newly blind. I
think it is important for the rehab professional to assure the person that it is normal to have a day when you don't want to be a model or a super-human
blind person.

Angela Farmer Dothan Alabama USA

**4. Its not the "not seeing thing" that I have a problem with. This has always
been my life. Its the Sighted World that needs adjustment. Are we just
supposed to be happy *N* down on the plantation taking what the rest of the
world has to dump on us? (ADA) -- oh what a wonderful gift - thank you
master. Take for example Microsoft Windows. I first learned to use computers
back in 1975. There were no happy little graphics that we had to deal with
back then just code and key punch machines.

Charlie Web
My Web Site
http://www.99main.com/~charlief/blindness.html

**5. Boy can I relate to this one. The fog descending, the desire to want to stay at home and not go out and function in the working world. The constant cheerful
attitude when sometimes I want to run screaming "Enough!" Although I am sighted, this one really does speak to me too. I worry that my efforts are helpful
or if my presence is too all consuming. Focusing on the successful parts does help. However this world just seems to be getting very unpredictable and
scary. The good thing? These phases are usually short lived and pass quickly. Just realizing that I am not alone was very helpful!

Suzanne Lange Chico, California USA

**6. Is there a measurement for adjustment? People are different. Some can handle sudden blindness, some would rather have lost it slowly. This can also be
related to the loss of a loved one. My wife lost her mother a year ago. She is doing quite well. Her father is still taking it very hard, and why not?
He was married to the woman for 50 years!!

My point? Not only does it depend upon the person, it also depends on the circumstances surrounding the blindness. My loss is due to a genetic condition.
Who can I blame if I lose my sight? I know that if the day comes, I probably will have a time of mourning my loss of sight. However, because of some
very good people that I have been involved with, I also am pretty sure that I won't mourn for long!!

From time to time, I do get a little jab that reminds me that I cannot see as well as I use to. And, oh it hurts, and yes, I do have a short pity party.
Then I remember a few things. One there is always someone in worse circumstances, two, life goes on, and three, I serve a great big God who loves me
anyways!

So, how can one measure adjustment of a loss? Before answering the question, please be sure to put yourself in their shoes, and in their circumstances.
Then answer by stating how well that individual is doing according to the personality and abilities of that individual; not by the average blind person.

Gary D. Crane Bellevue, Nebraska USA

**7. As I read the thought provoker I started to see myself. It seemed like
everything this person talked about was me instead of him. I can only speak
for myself, but on the question of whether the up and down feelings are
normal, I think they are. I have these up and down feelings as well as do
some of my other friends who have various disabilities. It is like this, we
have these extra obstacles to overcome in our lives, but to tell you the
truth we are just like everyone else. When one of my friends, who does not
have a disability, is getting frustrated because they are driving behind a
slow driver I am getting frustrated because my transportation is late.

What I am trying to say is that each and every day every individual
gets frustrated about something and has the up and down feelings that the
person in the thought provoker had. It is just that the frustrations are
different. As a student social worker I work with people everyday who have
this same thing of ups and downs and they want to know if they are "normal".
My answer is that yes they are normal the only difference is why the
person is feeling the way they are at the time and how they cope with the
feelings.

Having a disability is never easy, yes we may not feel normal when we
have these feelings but we are, and yes we are great role models, but not
just for newly disabled individuals, we are great role models for all
individuals.

Sincerely,
Jannel Morris, St. Joseph, MO.

Jannel Morris, MWSC, Student Social Worker
4803 E. College Dr Leaver ton Hall Room 10-10C
St. Joseph, MO. 64507
(816) 383-6346
jannelm@hotmail.com
or
jlm2644@griffon.mwsc.edu

**8. Unfortunately, some, indeed, many blind people would condemn Jack for his thoughts; I believe, however, that he is not at all to be looked on condescendingly.
Even in organizations of the blind, be they formal or informal groups, the blind condemn each other; this should not be. First of all, I think Jack needed to talk. Secondly, he needed a good listener. Having been in seminary for one year, I have had plenty of opportunity to see and experience both sides of the coin. I know that truly good listening is not simply hearing. Rather, a good listener participates while the other
person is talking, by, for instance, periodically paraphrasing what has been said.
Now, let's consider Jack's blindness. Blindness, in itself, is not a problem, is just another characteristic; as we all know, characteristics can be both
good and problematic. We don't know if Jack is newly blind, or if he has been blind for several years, or for for his entire life. In the story, Jack could have been either.
Perhaps it was unintentional, but Jack has illustrated the necessity of associating with other blind people, either in formal or informal organization.
Such association can be as simple as regular telephone conversation or e-mail; or, he could join a National Federation of the Blind and/or American Council
of the Blind chapter or special-interest group. Personally, I do them all, and am active; I find it much more satisfying than having no one to talk to at all.

Jeff Frye Overland Park, Kansas USA
jfrye2@kc.rr.com

**9. Even though I'm blind from birth, I'm tempted to write a response because I did my college thesis on the subject of adjustment to blindness and so I feel
I could shed some light on this story. I hope it's ok to address the so-called Jack, as if I were talking to him to make it sound a bit better.

*start/response: Hi there jack: Yes, the up and down feelings are normal in the adjustment process; it's normal that one feels grief especially at the beginning.
Your already knowing Braille, cane travel and housework techniques is a great sign that you're adjusting normally. Be patient; this takes time.

You said that you wish you could be faster in Braille. As time goes by and with the great positive attitude you have towards your blindness, you will in
no time be completely adjusted. I'd recommend that if you have a good friend, preferably a good blind role-model, once in awhile go talk to him/her about
your doubts and/or any problems you might have; talking is great therapy!

Gerardo Corripio

FROM ME: Note how several respondents thus far have mentioned interacting with other blind people; role models. They are out there, most communities have them, they may not be known to you, but there is always a short path to find them. Where might you find them? Consumer groups for the blind, rehab facilities for the blind and there usually are phone numbers and/or WWW addresses to find them.

**10. I think the thing to remember the most is that you’re always going to have to adjust to things, whether you’re blind or sighted. The difference is that with
blindness and/or any other disability, you’ve got the ignorance of the public because they can’t imagine you can do things without sight, hearing, or being
able to walk.

And sometimes I’m better at dealing with that reality than other days. Although the one thing that really gets me is when people think they know more about
what I can do than me and these are usually the people who don’t know me at all. I get more guff sometimes from people at Amtrak when I just want to go
down the stairs or escalator to the tracks on my own because they don’t think I can or should. I mean, I’ve been blind all my life, I’m an adult, and if
I fall down the stairs or get injured somehow because I don’t know how to use an escalator, well, that’s my fault, isn’t it? And my tough luck.

And then there are the people who rave at me because I could trip someone with that cane, and why didn’t I get a dog, and who did I think I am telling them
what to do or where to go when I get mad at them for interfering with me.

I guess these things are always going to make you question your ability: What did I do to look so incompetent that they were drawn to me so much that they
had to tell me everything I was doing wrong? In cases like that, I have to remember that I’m not Superman but I’m not Mortimer Snerd. I pay my taxes, and
my bills (well, sometimes late, but so does everyone else), and I pay too much in rent. I have moments of what I consider great inspiration and moments
when I just tell myself I’d be better off staying in bed today. I’m not a babe or a bombshell, but I married the greatest woman in the world who, for some
reason I’ll never quite fathom, thinks I’m the greatest guy. What other people do with that is up to them to deal with.

Now if that little voice would just keep silent.

John D. Coveleski New York, New York (jcoveleski@mindspring.com )

**11. I’m not Jack, but I’m me. I have those moods too, too many of them is what I’m told and sometimes I feel they are to often too. I get depressed now that I am blind. Maybe I would get depressed if I wasn’t blind, but I don’t know that, I just know I get that way now. Yes, I do think I get depressed because being blind is depressing sometimes like when you can’t just jump in a car and drive where you want or see what is around so you can get there faster or can watch a move or go out into nature and see what is what or do all the sighted things that most everyone else on the planet does.

Some days I do have the fog and weight of my depression shrouding my every waking moment. sometimes it will last for days. When it is upon me I try to keep busy and not think about it. It usually makes me a little angry and hard to get along with, I know. I might say something’s that I would not normally say. I don’t like it, sometimes I feel I know what those people feel like who end it all because they are tired of not feeling like life is bearable. This I thought I would never experience but I’ve seen it and know the real blackness of life is yet possible.

I am not sure I can change how I feel. but I know being around other blind people does help.

I would tell Jack to do something about his feelings. This could get worse for him.

by, the blind guy next door

FROM ME: A good question, “Where does our point of concern begin for someone experiencing depression or what ever you wish to call Jack’s mood? Where does the individual themselves or those around him/her get going on helping the person to work through the issues bringing about the depression or moods?

**12. Well, I think that it is normal to have the ups and downs. I've been blind since birth, and I have had those feelings. The key is to be happy with who
you are.

Rachel Black Tucson, Arizona USA

**13. I like the way this chap owns his own reality. No matter what the public thinks or sees, he knows who he is. I admire the fact that instead of blasting
his friend with his negativity, he contained it inside himself. I am the worst traveler in the blind arena. I live in a community where there is a high
concentration of blind folks running around . I have severe neuropathy in my feet and legs and poor balance contribute to my problems. The fact alone
that I do get around is probably somewhat of a miracle. That said, I get so frustrated with the sighted people constantly commenting on how I move. Just
once I would like to enter a room and have no one comment on my movements. But it is doable. I guess we have our irritations and annoyances, but we still
try to smile and be positive because it is not what we have to deal with, but how we deal with it.

Pam McVeigh Louisiana USA
Pamelot@cox-internet.com

**14. I believe that people with blindness (or any severe disability for that
matter) will feel better about themselves if they understand that the
adjustment process is lifelong. We all have days when we deal more
appropriately with our disabilities than others. It doesn't matter if the
disability is congenital or adventitious. The challenges of life constantly
remind us of who and what we are.
Mary Ellen Ottman

**15. I think this guy is doing just what we talk about in NFB. I think he's pretty well-adjusted. He seems to have mastered most of the alternative techniques necessary for daily living. He can even read Braille, and that's really awesome. Some folks can't even do that. (I'm one of those who is not a very fast Braille reader). I think his feelings are pretty normal. I've had some of those same feelings and some days it just really sucks to be blind. It sucks because of how some sighted people perceive us. There are some that assume we're incapable of doing anything, and then there are those who do assume we're "Super-Blind." I think this is a really good thought-provoker and really captures the essence of what we talk about in NFB. And who knows? Maybe
if this guy got involved in NFB, he wouldn't feel so alone anymore and wouldn't be so sad. Just my thoughts!

Nicole NFB-talk

**16. I have a friend who is blind and some times I see him act like this Jack. I would like to know from the group what I might say to him at those moments?

Jacky Smyth Fort Smith, Arkansas USA

**17. You came up with a question I have asked myself a lot lately. If I really am well adjusted to my blindness, why is the thought of moving to a small town
and being unemployed so hurtful for me? Would I be right to just assume that as a well-adjusted blind person, I would have the same opportunities as anyone
else? What part does accepting and working within my limitations play in being well-adjusted? There are so many things to think about that I am sure
there are days when I am not well-adjusted. My fears offiding out some of my limitations after I get a job haunt me. Having a job end because my visual
situation makes the limitations I do have stand out like a sore thumb is a constant threat to my peace of mind right now as I look for permanent work.

Nancy Coffman Lincoln, Nebraska USA

**18. Some people reading this message might say I have no room to speak since I've been blind my entire life. I would disagree with them. There have been times
when I wished I could see. A prime example would be when the elementary school I attended had its parade every year on Halloween. I wanted to see what
my friends, classmates and those I went to school with were dressed up as for Halloween.

I think this person is dealing with their blindness well. I've got a friend who just lost her vision in April of this year. She still asks similar questions
even six months later. I think in some ways it's something you can't completely get over. Everyone is a little different about these things, though.

With Love and Prayers,
Kelly Stanfield Kansas City, Missouri USA

**19. Wow that is an interesting story. let me tell u what I think.
first the person is doing good on adjusting to getting around and doing
things but he has adjusted to being blind which can take a while or can
never happen. some people don't want to believe they are blind but if they
meet the right people it will all turn out okay.

Kristen Osage, Arkansas USA

**20. Well, this sounds like days in the life of anybody who has up and down
moods. If we're getting used to a handicap, the feelings must be
accentuated. Blindness is a happening in our lives, not our lives headline unless we choose to make it that way.

Leslie Miller

FROM ME: First, do all of us experience moods, ups and downs? Why might some of us experience more intense ups or downs? How about this ladies characterization of going blind, it being a happening, one of many in a life and not something that has to be the major defining event in a person’s life? (Like it is just one of those things that make me up; it is not all that I am.)

**21. I think that the best way to deal with this sort of problem is to get a phone number, relax, and make the calls so that others can be helped.

Levi Campbell Lincoln, Nebraska USA

**22. I would tell this person that he has certainly come a long way. The adjustment to blindness is probably something that takes a long time. But, at least,
he has learned some of the blindness skills so that's a beginning. I hate to inform him that he will have more difficulty adjusting to the public's perception
of blindness. Some people think you're amazing for just existing; some people use the blindness to keep blind people from getting the jobs they deserve;
some people use the blindness to become more powerful. It's a frustrating situation and it never ends. But at least this person is getting a realistic picture of how things will be in the future.

Mary Jo Partyka

FROM ME: In this response, as well as in several others up to this point, note the pointing out that there are two potential sources of stresses upon the blind person’s adjustment process, the blind person themselves and that of the public. In other words, there is a whole additional set of stresses upon a blind person’s psyche that comes from “other people’s” adjustment to blindness; this mixed in with your own. So, how tied together are these in their overall effect upon a person’s adjustment? Can you separate them and work on them individually? What specifically can you do during the adjustment process to speed it along, in respects to working on “what is your” baggage and what is “their baggage?

**23. There are different levels of adjustment to blindness that can vary from one area to another and each person's measurement is based on interpretation.
These levels of adjustment come with self-acceptance of the situation they are in. Reading the story, Jack sounds like someone who has recently gone
blind and is still learning to adjust and accept his blindness. It sounds like he feels vulnerable but does not want to tell his friend that he is struggling
with adjusting or having difficulty accepting his blindness. He knows that he is able to travel with a cane, work in the garden, cook, and all the other
things essential to independent living. However, he feels that he should be able to do more, such as read Braille faster than he does. This difficulty
in adjusting, then, transfers to how he feels like he's always on show when out in public--having to answer ignorant people's questions about blindness
and his abilities. He understands cognitively that answering questions is helpful, but it is hard for him emotionally because, he, too, is still adjusting.
While he doesn't seem to see himself as having adjusted to being blind, the public sees him as having adjusted and accepted being blind because of the
public persona he puts on for passersby.
Even if Jack has been blind all his life, it can sometimes still be hard to accept the fact that there are some things he won't be able to do, such
as drive a car. Sure, he knows that there is public transportation, but, perhaps, he wanted so badly to be like everyone else around him but he cannot.
Thus, he feels that he doesn't fit in anywhere, which leads to wanting to be alone most of the time. No, ruminating over being blind is not the solution, but there are times when situations come up to remind you that you are blind and have to learn
a new method of adaptive techniques to work through them. Such is the case with advancing technology in the computer and digital age. If you don't know
where to start in getting training or you don't know that there are various assistive technological equipment being developed constantly, then, of course,
the situation seems impossible and you feel that your blindness has, once again, presented a barrier and inconvenience. Whether you have been blind all your life or are newly blind, periods of ups and downs are normal. In fact, periods of ups and downs are normal regardless of whether you are sighted or blind. Periods of ups and downs are only reactions to the situation at hand that pass over time.

Linda Minnesota USA

**24. I think that person is adjusting ok to blindness.

Kizzy USA

**25. this general question about a good adjustment to blindness, in my opinion
cannot be answered. Each individual is going through this in their own unique way and for some it may be much easier than for others. Too much depends on the age of the person, whether they are single or married, have other health problems and a whole array of things. I think all would agree there are good days and bad days but for many they never adjust to this. I am pleased that some on this list seem to have come to terms with blindness but it falls under the category of what I call "different strokes for different folks."

Rose RPlist

FROM ME: This lady points out several additional factors that may or may not influence the adjustment process- age, gender, health, etc. Culture would be yet another. What do you think? How might a counselor address some of these factors? How might the blind person themselves deal with some of these in order to bring about change?

**26. I can safely, say, I see myself, in Jack.
With the on flash of RP and knowing that I would go blind. Well, it was a
period of adjusting! From a nice marriage and two boys. To learning about this RP and watching it slowly take away my sight. Simply described:
Like watching your fingers fall off one at a time! Well, needless to say of the anger, being scared, fear, frustrations, drinking and etc. Even to the point of destroying a marriage. Well, needless to say that was 12 years ago and I am doing fine and for the
most part flying high. That is not to say I don't have my days. Yet, like Jack, being totally independent in household chores, yard work, flower beds, mowing the lawn, working and raising my newly adopted son; as a
single Dad. Well, I get tired of you are really not blind, you are special
or what a miracle. As Jack, notes, in his story. Yet, I've realized that
living in the positive, as counseling, showed, goes further. Than living in
the negative. As if one portrays a negative attitude. This will, drive, away
all good friends. More important, Family!
Also, I question is it the only thing for the, Blind? I don't think so. It
can be for the cancer patients, abused children/ young teens, mental issues
and many other health issues. So whether sighted or blind. There can be
Jacks, Statement: " Am I really adjusted?" Without using the word blindness.
Why do I say this? Well, I've had to re-adjust to this new life, many years
ago. My New son, Norman, is learning to adjust, from a previous family
abuse, and low self, esteem. To this new guy, he is starting to become.
To watch my sister, Mary Ann, strong and healthy, lady, have, one of, her
breast removed; because of cancer. Talk about two different types of
adjustments! Seeing these, I find my blindness, nothing, really to deal
with.

Yes, I know it is hard. When, one has sight and then nothing or gradually,
lose it. Yet, look out there and see those others that are suffering more or
less than, you.
I wish I, cut and pasted, Jack's last statement, he made. As it would make a
good closing.. The question, what counseling do? Well, nothing really; until the person is ready. As I was not ready in the, beginning. One of the most important things, I teach my son's. " You can not love another; until you can love yourself. Along with excepting you for what you, are. Whether it is a handicap of some form, looks, self esteem and self worth... "
This I've done; yet, like Jack, I can say too, am I really adjusted, in this
world, today? I think so! As I am raising a family, speaking on behalf of
guide dogs, being involved in our community, working and loving life!
So, Jack, you ride, high! I wish nothing but, positive feelings and love for
those who are not there. Hang in there and you, will make, it!

Gene Stone Portland, Maine USA
geno@maine.rr.com

**27. I think Jack is doing fine! If we are honest with ourselves I think we all would admit to "having bad days." Even those with no disabilities have their
bad days. All my life I knew that there was a greater chance of me going blind then not going blind. I went to school, drove a car, got a good job, married and
raised a family. Later on I went to college and got my nursing degree. In nursing we are taught about the grieving process that everyone goes through
when a love one dies, a divorce happens or the loss of a body part. I could counsel my patients and help them work through their problems. I kept the
possibility of me going blind hid deep in the farthest reaches of my mind, only reaching for it when another new symptom reared its head and startled me.
The day came when I had to admit to my eye doctor certain symptoms and that day I had a good job, could drive anywhere I needed to go and use any power
equipment. The next day I was legally blind, had no job and could not drive. The loss of vision continued, slow at times and more rapid at other times. At first I felt all alone. Though with a great wife and family, still I really felt that no one knew what I was going through. Then it finally hit me! I was just going through the grieving process and no two people go through it alike. We all must pass through it when we lose our sight.

About 8 years ago two things happened: One was that finally I had realized that I was not abnormal, that my feelings were no different then the next person
going blind. The other was to put my training to work. I like what several others in this TP have said, that they are more contented when helping others.
So I have found I help myself when I help another. Do I get upset when people make remarks about "that blind man" or " you can't do that , you are blind!"
Oh yes, but then I have to move on! When I can meet a person in early stages of losing her/his eyesight and can offer him/her hope, then life for me
grows better. For had I not gone blind I could not relate fully to what another blind person is going through. Do I have my "down" days? I sure do and
more in winter when I can't be working outside a lot, but I will not allow these down days to hang on too long.

I guess I would tell Jack that he sounds like he is having a good adjustment to blindness. I would encourage him when he has these low days and be happy
for him in the good times!

Oh yes, I can not read Braille but I know enough so I can read my marked appliances and so I can play several games that are in Braille. Thus I can still
join in with many family fun times.

Ernie Jones Wala Wala, Washington

**28. I guess blindness is harder to adjust to for someone who has gone blind
later in life, via some sort of injury or a disease. I have had to deal
with blindness throughout all of my 28 years in the world. I consider
myself pretty well-adjusted to it, with a few exceptions. I will explain
what I mean. I have experienced, numerous times, people telling me what an
inspiration I am to them. While I do on the one hand see this as a
compliment and thank people when they tell me that, I think it puts me and
people like me in an odd position. I don't really possess anything nobody
else has, except for my white cane, I just do things slightly differently.
For example, I was talking with my workout trainer during our session the
other day about computers. She marveled at the fact that I can and do use a
computer even though I am blind and cannot see the screen. I explained to
her about my screen-readers, and I told her that they really have opened
doors for me that otherwise would be bolted shut. I explained to her that
my computer is no different from anyone else's, it just has software which
allows me to access it. It acts as sort of my eyes, and reads everything on
the screen just as sighted people have eyes that can read the print on a
computer screen. So on the one hand, this kind of ticks me off, but I know
that these people mean it in a kind way. I'll tell you what really ticks me
off, though. There is an abundance of bigotry in this world. I'll
elaborate on this. The rehab people here are extremely hard to work with,
because they don't possess the skills or the patience to work with me. I
think it would be much better if the rehab agencies would hire qualified
personnel, i.e., counselors who are blind and therefore have been trained in
Braille and adaptive technology. I think this is true for specialized
public transportation, i.e., and you probably know what I'm going to say,
ADA Para transit. Having said all this, I think blindness is in some ways a
nuisance, but also its a way of life.

Jacob Joehl

**29. What a thought provoker this one has become for me! I have been partially sighted since birth, but lost a majority of vision from my right eye in May 2002 due to a semi-detached retina. I see very little in my left eye compared to the vision is had in my right. I have found that I had to and still need to make some adjustments to meet my visual needs. I feel that it is not just the person who needs to adjust but there is a lot of room, where society could be more willing to except that people are not
all the same, and do not match their own model of what a person is or should be able to do. I work as a lecturer in Computing, and come across an number of different people in a year. The learners which seem to have a problem comprehending that I am visual impaired and do the job I have got, are 16 to 22 years olds.
A situation accrued the other week, where a couple of learners where talking about driving a vehicle, and one of them asked me if I could drive.
All the learners in this group are aware of my limited vision and have had to stop and think about my answer to this question, due to the number of follow
up questions which could follow. I calmly replied "No", one of them, then ask me "why Sir? haven't you bothered to learn". Once again I paused a thought about my answer.... I replied "Do you think they would let me go behind a vehicle of the public roads?". This person seemed a bit surprised about my answer, then the person said "well
I suppose not. How do you get about?"
I thought that the last question was extremely offensive. I replied "I think you can think about that, but you should think how people without a visual impairment get about, and those who do not drive. I have realized for many years that society thinks people can not function without the use of a vehicle. I know this can be difficult when trying to go
places, and having to rely on public transport. Jack seems to have managed to work around his visual impairment and is continuing with activates which he enjoys.
Jack should bare in mind that people have good and bad days, but the added impairment can sometimes magnify the situation, but he should remember that there
are many more people in the world facing the same challenges as himself.

Martin Rowe Leicester, UK

**30. Well, I can't say I'm newly blinded - been partially sighted when I was younger, but now blind. But yes, I do know those "blind" days as I call them. Sometimes I literally go through weeks when I never consciously think about my blindness or how I'm coping. And fortunately people don't think it necessary to tell me that I'm coping. But then those blind days. It usually gets triggered by a very small thing eg. scratching my face on a tree my guide dog did not see, getting face cream on my
shirt, searching for something I dropped. Then suddenly I get frustrated, angry and beware the person who then tries to help, tells me how wonderful I am or whatever. At least I've learnt to become civil, I think, because after all it's not their fault. But it's funny how a very small thing can sometimes trigger your emotions. Fortunately those days don't come too often and usually I'm left alone to do my work like everybody else. Usually I try to explain how I cope if somebody really seems to need to know and yes, it is wonderful to know that you can make a difference in others' lives. Somehow they sometimes think that blindness must be one of the worst things in life to cope with and they seem to gather strength to face their problems. Also it does help sometimes to hear from a newly blinded or younger person that you can inspire or help them. But yes, I don't always feel like being an inspiration! And thank heavens, I never want to be one of those super blind people - I can't and I only want to be myself. I just like it if I can do it the way I find best for me. I believe in doing as much as possible myself, but I don't mind asking for help if faced with things I can't, or find difficult to do. I do count myself lucky that I have the opportunity to do a normal job and where people accept me for my training and skills and not as "the blind person". But, yes, those blind days come to spook me every once in a while!

Retha

**31. Boy oh boy! Do I hate being the MODEL! I just want to be me and if I don’t feel like getting all groomed and want to be a slob, then that I will be and I don’t want people to come back on me and say I was not portraying the right stuff! I know that most of the public will see one of us and take what that person is doing and think all other blind people will be just like them. The public does that to anyone from a minority status. But boy oh boy, I hate being the one they will look at. Not fair, but boy oh boy, guess life or at least humans are that way.

Robin Shockee USA

**32. Great thought provoker. What is adjustment any ways, How many times do we play the game or slough off the ignorance. I like to think, or at least keep my
sanity by thinking I have the choice of how to or even whether to react to each individual invasion of my privacy. Most days it is just easier to be
the blind poster child. But some days I feel compelled to educate and have the time and inclination to do so. I teach in my therapy through work that adjustment
is a place we can go in our hearts and be centered for the journey. It is not a process with the famous wellness goal. I think this is a set up of sorts
as it sets us up to attain a goal and in so doing the focus misses the entire experience day to day. I encourage people to feel empowered and strong
in their own environments whether that be disability, mental health or whatever and to make realistic choices based on realistic expectations. The part
I tend to struggle with is the realistic expectations. Something as simple as denying my kids and I access to a fast food chain because of my guide dog still can bug me because I expect in the years 2002 not to run into that level of ignorance and prejudice. But if I can put the situation into perspective
it all works out. In that case I sometimes just smile , the biggest compelling smile I can muster and suggest if they have a problem they could
call the police while we ate and then we could talk about it. Adjustment what does it really mean anyway. Life being blind is hard , but when life gets hard the roles of being a brainless poster child, I find work most effectively sometimes.
Wow well I thought I had little to say but I got a lot on paper. Thanks for the thought provoker.

Lisa McGauley Victoria, British Columbia, Canada

**33. When I wrote about feelings of vulnerability and shared some moments of frustration in my poem, I was trying to say that sometimes blindness or others perceptions of what blindness means can get anyone down. I never mind mentoring people who are struggling to redefine themselves with this added dimension of blindness thrown in to the mix, not because I think I have all the answers, but because I understand how overwhelming it can all seem. There is a line in Edna St.
Vencent Millay's poem, Prayer to Persephone I particularly like, the poet asks Persephone to Take her head upon your knee and say to her, My dear, my dear,
its not so dreadful here. That is what I try to do. However, the shy child and awkward adolesent I once was sometimes pops up whining when I am required
to present myself to large numbers of strangers because I feel the burden of trying to convince them to look beyond the obvious blindness to see the real person inside. That is when the burden of being a poster child is just a bit heavy. I just wish that the public would get over wanting to categorize us as either helpless nonentities or endowing us with sainthood. Neither saint nor sinner am I, just another human being trying to make the best of the cards I have been dealt. Adjustment? For me it means forgiving myself for not being perfect and just getting on with living. I also find a wicked sense
of humor helps a lot, I even find it useful to laugh at myself when I get to taking myself too seriously.

DeAnna (Quietwater) Noriega
quietwater@codenet.nett

FROM ME: In respects to “categorizing” and treating all the blind in a certain way, how much of that is due to no more than the makeup of the human organism’s way of how we tend to learn and behave? Meaning, we the blind have to be patient with ignorance, that most sighted people do mean well, that their behavior toward us is highly dictated by the way we all function as a living, thinking and feeling organism? And sure, there are some additional factors as part of this mix, like prior experience/knowledge, manners, culture, etc. so I am saying, we do need to educate one another, but we as blind people must also just consider the source ; we are dealing with a human and their unique set of limitations/abilities. (Sometimes they/we just can’t do any better.)

**34. In the Thought Provoker, Jack is showing good signs that he is well on the
way to adjusting to blindness. Sure, he would like to read Braille faster;
but other than that, he is not whining about what he cannot do, like asking
for handouts for free directory assistance and free everything else, or
refusing to take a cab to buy a get-well or greeting card, because of the cab
fare, if and when he has no other way to be nice to a friend. I have seen
all this, and it is extremely annoying. But Jack is not inviting others to a
pity party. Certainly he needs to talk his thoughts and feelings out, as all
of us except the most obstinate are willing to admit that we do; and Jack
needs a genuine listener. And that is the point of an organization, even
organization by telephone or e-mail.

Jeff Frye Overland Park, Kansas
USA jfrye2@kc.rr.com

FROM ME: Do look over previous responses to this one and note how many people have suggested that talking with other like-minded blind people is one of the best answers to help either bolster or boost ones morel or attitudinal status.

**35. This Thought Provoker story about a blind guy's reaction to being considered a blind "role model" just because he is a competent person inspired some very
interesting replies. (Although I do wish the writers knew the difference between "excepted" and "accepted" and a few other such words that sound alike
with voice output software.) I think these "essays" would make a good addition to a discussion on handling blindness at any center for adjustment to blindness.

Lorraine Rovig Baltimore, Maryland USA

FROM ME: I too can be fooled by what I think the speech software is saying; sometimes it is a mind set, sometimes it is the ear or the true closeness of how the man-made hard and software function. Braille is definitely better for editing (oh to have an 80 cell display to edit with; a dream of mine).

**36. Reading this Thought Provoker reminds me of something very positive. Although Jack doesn't like where he is emotionally he is taking care of himself and
allowing himself to have his feelings. His friend may not want him to be in this emotional state, however, Jack is staying away from people, but allowing
his feelings to flow. Emotions can't be put away and not dealt with. You may not have to act on them, however, but unless you want them to pop out at an inopportune time, you must allow them to flow. Jack knows he can work through them much easier if he gets busy, which proves that he owns his feelings and is aware
of how to work through his emotions. One thing blindness has helped me with is identifying and accepting my emotions whatever they are. The idea that
anger is empowering sometimes surprises people, however, when I get angry about my blindness I look at ways to work through my anger by learning something
new. My anger gives me the energy to work through my fear and frustrations. When I am afraid, I think of things to help me feel safe and the fear goes
away. Even if it is seeking training from an outside source. Everyone goes through their process differently. When I learned to accept me, it allowed
me to accept others blind or not.

Sandra Jordan California USA

**37. Look a lot of us who have sight and go blind have psychological problems in our adjustment. This is a loss!!!! Being blind is not desirable. Being blind is not accepted by most of the sighted world in which we live! How can we like being blind! We will have days when it bothers us more than other days! This is normal! Hating being blind is normal! Yes, we need to learn to live with it.

Mark P. Tucker, Kentucky USA

**38. The blind need a public relation campaign to educate the sighted, or as I call us, normz, meaning not perfect either. If there were an average blind person as a regular character on a tv program, that would be a step in the right direction. I'm not at all sure what an average blind person is, but a character could express some of the problems and indignities the blind face.

We normz are ignorant, we simply do not know how to treat or to behave around blind people. Our up bringing teaches us to offer help, but we don't have a clue when or how to offer it or even if it is wanted. We see blind people as brave because we ourselves have problems coping and we have sight, so anyone else who copes as well without sight, is a hero, or so we think.

To the normz who feel a need to make comments about blind people, especially comments that are cruel or stupid, well, they are the cruel and stupid speakers, and should be thought of as that.

Minorities have made a lot of gains in television, it should be the blind's turn soon. Most Americans, and I'm sure other nations, are influenced by what they see on television, it can be a great learning tool.

I read Thought Provoker and send it to my sighted friends, and I hope they get an education like I am getting.

Bill Heaney Philadelphia USA

**39. For me, this doesn't really come down to a blindness/visually impaired thing, its
all about being a human being and recognizing that you're not perfect. Yes, you try the best you can and if you give 100% a day, that's all anyone can really ask of you. it really is O.K. to have off days, even several in a row.

What really counts for me is the ability to learn from those off days and to try to turn the failures experienced, whether emotional or physical, into successes the next time I'm confronted with them. its all about recognizing the human spirit and emotions.

Jeffrey Pledger Burtonsville, Maryland USA

**40. Though some may say Jack’s problem is no more than a mere human mood thing, the point of the forum and the story is being blind! The point is Jack is wondering how he is doing with his adjustment to being blind! He must have once been a sighted person and is now blind. This I think is the majority of blind people. Most of us were once sighted. the number of us who were born blind is few. Thus, at some level of adjustment we live more comfortable. At some level of adjustment we can function and live in a normal setting of work, family, school, community and all that. Until we are “adjusted” we are not able to hold it all together and be successful in our lives. This is true!!!! And I am not saying that to be not adjusted is to be nuts, but if you are not stable enough to stay with something like going to school or stay reliable in a job or in a relationship, then these activities of life will not happen for you and you will not be successful or be happy. So when JACK questions his adjustment and asks if there is something he should do, then we and he better look hard at what is going on. I see too many of us that are doing okay, but there are major problems still there and just being carried along, managed. We must recognize within ourselves or in our friends where these unsolved issues are just being tolerated and we must do something to eliminate them. “

Jerry Polson
USA

FROM ME: Just getting along is never good enough, right?

**41. There once was a time when I wondered how well I was adjusting to or accepting blindness. As I became older, I decided I was worrying about the wrong thing.
Now I focus on whether I am doing what I want to do with my life. When I reach the end, I don't think I'll worry much about how well adjusted I was.
More likely, I'll regret the people, experiences, and other things I never managed to fit into my life -- lost opportunities -- whether they resulted
from my approach to dealing with my blindness or from other life choices.

Jeanine Worden Arlington, VA

FROM ME: Looking at this response and comparing it to the two above it... It puts me in mind of that old fraise of, “Something can be either the means to an end versus that something becoming and end in itself.” And here that something I’m referring to is questioning oneself, your actions, what you said and how people are reacting to you. so, is the process a healthy one? Is it one of those things that has a fine-line that you must watch out for? Who can best evaluate if and when that fine-line has been crossed?

**42. I have been lurking here awhile and haven't had a chance to post. My husband is deaf/blind. Our oldest son is hard of hearing and visually impaired. Our middle son is deaf and showing some symptoms of vision problems (soon to be tested). Our daughter, the youngest, has not been affected to date. This is a hereditary condition obviously. Anyway, on the topic of adjustment. . . yes, my husband has good and bad days. I think it is part of being human. There are days when he feels down and frustrated. There are days when he feels confident in himself and quite happy. We moved to a more accessible area with public transportation, my husband got a guide dog. The other day he managed to go into the city and see a play on his own. These things he would not have been able to do if we had not moved and he had not gotten his guide dog. Doing these things have helped tremendously in terms of him adjusting to his blindness. But he still has bad days just like anyone else. Part of our frustration is that we know our two boys will go pretty much through the same thing my husband is going through now. It is my hope that my husband can be a good role model for our boys in terms of adjusting to progressive vision loss. Even I have my down moments. Anyway, this is a nice group and it is interesting to read responses from other people here.

Sue Chicago, Illinois USA

**43. I think the Jack in this story could have a serious adjustment problem. He speaks of fog of depression that he has again and again. He is also questioning it and I see that as a call for help.

Mark Key Florida USA

**44. In regards to Jack's adjustment being a human thing vs. related to blindness, Resp. 40 pointed out the possibility that Jack may have once been sighted but is now blind. They said, "Most of us were once sighted", citing the point that Jack's adjustment was more due to blindness as opposed to just a human
thing.
I want to say here that some of us blind people who had, or still have, light perception thought for some time that we were able to see like everyone else, and we based our hopes, dreams, and goals on doing things that blind people cannot obviously do. Such was the case with me. For the first eight
years of my life, I never really knew that I was blind. Because I could tell the difference between day and night, whether it was cloudy or sunny, when
the light in a room was off or on, and could see colors up close, I never thought I was blind. I always understood blindness to be not being able to see
any light. Sure, I was given a cane and was shown how to use it, and I was taught Braille when I attended the school for the blind for a few months before
I came here to the States. I just figured, though, that these things I was being shown were things some sighted people did while others didn't. When
I came here to the states to my adopted family at age eight, one of the first things I asked was how old one had to be to be able to drive. After telling
me all the criteria--having to be sixteen and obtaining a license--she told me that I would never be able to drive. Stunned and confused, I asked, "why?"
That's when she told me the truth--that, though I had light perception, my visual acuity was not enough for me to be able to see road signs, stop lights, etc; that being able to see up close was not going to cut it. Needless to say, I was crushed, as being able to drive was one of my major hopes, dreams,
and goals. Of course, that led to wondering what other things I was not going to be able to do, which, then, led to what I know now as bouts of depression.
Thank God I learned a lot over the first two years that I was hear about what other things I would still be able to do as a blind person, and continued
to learn more as more technological advances of Braille displays and speech software came out with the rise of computers. It also helped that I had other
blind role models throughout those first two years who were parents of sighted children or were childless couples who owned homes and lived independently
without sighted supervision.
So, I think that adjustment not only has to do with recently going blind, but it also has to do with your own understanding of your own condition based
on what you were told, or lack there of. Once you understand what your limitations are yet are informed of the many more things you can still do despite
some limitations, then you learn to adjust. Of course, this adjustment process is not an overnight thing or without doubts and fears, but you learn to
overcome those things that you see as barriers through self-determination and support from positive role models and peers.

Linda
**45. we all have our good days and bad days. I mean we as people, not just blind folks. There can be many reasons for the bad days, only one of which is blindness,
our reactions and that of others. Problem is that whether or not we like it, most folks, including the blind themselves tend to interpret our environment and see the world through the lens of vision or lack of it and how that variable affects our lives. Poster boy or depressed, we are seen and too often see ourselves based on vision, value
of vision and even various aspects of blindness. Its the stereotype, the fact that we are in fact a minority whose feats and failings are attributed to the characteristic rather than to our character or lack thereof. I think that it is important to realize that we are in fact a cross section diagonal slice of society, including feelings, functioning and so many other things. Our feelings are probably just as normal and normally distributed consistent with the general population given a wide variety of situations. The fact that society and we as a part of that society may tend to attribute not only everything we do but things any blind person does to all blind people that generalization of perception to all members of a minority group, not limited to the one person observed to be doing the behavior.

Past the minority status and stereotypical reaction, we can also consider the why's of our situation. I believe that most blind persons do not get or at least take the opportunity to deal positively with blindness and to develop positive attitudes or at least neutral attitudes about being blind. We are
praised often for doing the most miniscule things like pouring coffee, crossing a street. We are often discouraged from cooking, serving meals and moving chairs or often are greeted with reactions of amazement when offering to do so. We are often discouraged from working and are given access to many entitlements
contraindicative to work and self realization.
Most problematic, we are not expected to learn, and do and to be equal. Until recently we had difficulty being teachers, but welcome to be subordinate in our role as students. In rehabilitation too we are those to be serve, although we are allowed to aspire to certain positions and professions such as teachers
and counselors. But what about travel instructors? It has not been until very recently that blind persons found entry into this area of work, most of it with the sighted professional kicking and screaming as we move toward access. One of the most significant areas that may account for poor perception, self-esteem may be the soft bigotry of low expectations. It is alive and well in
education. However, it is also maintaining itself in services for the blind in rehabilitation itself. The expectations and demands in a training center for example may be minimal for the blind student. The student may be given information and even the answer for that situation without thought for how he will deal with it next time in real like. Skills are taught, but what is learned? Often skills only move one from one level of dependence to another instead
of truly moving the student from dependence to empowerment. Dealing with that person's inner feelings about blindness and getting to a place where its
okay to be blind is essential to a transformation past inequality, depression and despair. Experiencing success without having to attribute it to vision and having confidence in the alternate skills are e important. Finally knowing that it is not blindness but the attitudes that need to change is important.
If we leave these out of the mix in terms of training then we and the student lose. As we include them to provide a new mind set that its okay to be blind
and that blind folks can do stuff, the student will have that foundation to fall back on. yes I may some days feel more poorly than on others, but the immediate explanation need not be blindness...and the negative feeling can overcome more easily.

Ed Kunz Austin, Texas USA

**46. I think the answer to this one is yes. I for one have been blind all my life, at least as long as I can remember. Yet there are times when I don't feel
good about a situation. An example is employment. I have been looking for work for a very long time and nothing is surfacing. I think definitely there
are going to be those tough times in the lives of blind or visually-impaired people, whether born that way or with declining or total lack of vision later
in life. I for one am comfortable about being blind. Do I love it? Probably not and I might not wish it on other people, but I am managing okay except
for unemployment.

Jake Joehl, Chicago USA

**47. Good for our subject. He doubts his adjustment, but is well on his way. I figure that anytime someone is willing to question himself as this person seems
to be doing, that person has already begun dealing with the situation. As he apparently already realizes, the physical aspect of adjustment is frequently
much easier to accomplish than the emotional or psychological. I'm impressed that he chose to avoid striking out at the friend who asked him a question.
Blaming or striking out at others may be used to attempt control, while avoiding a true self-examination.
I feel that this person needs a good sounding board who is willing to listen, reflect and be supportive. In addition, when he is ready, I suggest that
he become involved in a consumer group, where he can receive social support, information and an opportunity to see how others deal with vision loss. I'm
a believer in involvement, where people can experience success, using forgotten or unappreciated abilities, learn new skills and, perhaps more important,
help others. In short, true appropriate adjustment is going to take time, effort, self-examination and a willingness to take risks or to change.

Doug Hall Daytona Beach, Florida USA