Changing Who I Am


Changing Who I Am

     Over the weekend I attended a seminar for blind and visually impaired teenagers. It was awesome. I am fifteen and I am partially sighted...Well, this is what I have been calling myself since the time I knew my vision wasn't as good as most people, but now I am thinking about what I am. The theme of the weekend was called "Being Blind and Being Yourself." Among several sub-topics ranging from self image, fitting in, handling stress, social values, what
does a friend give, and more like that, there was something said that has made me do some serious thinking. It was during the part where we were discussing our experiences of being blind or visually impaired in a school with all sighted students. Here is my version of the script of what was said, the part that keeps rerunning in my head. It started right after a couple of the kids who are totally blind had shared their problems.

"This is Alison, and I see good enough not to have to use a cane. What really bugs me is how the other kids who know I can't see well, won't include me in most of their activities."

     "This is Charles. I can probably see the best out of this group and what gets me is how some of the teachers don't ask you to do some of the lead activities in a class. Like in chemistry, when someone has to demonstrate an experiment for the class, I never get asked to do it."

     One of the counselors spoke up and asked, ”This is Robert and I have a question for you kids who have some useable vision. Do you see yourselves as being more similar to or different from your totally blind friends?"

     "This is Charles again. No, I don't tell people I am blind. I don't think that fits me."

     "No, I'm proud of what I can see to do. Oh, this is Wendy."

     "This is Alison. Well, I guess we're more different. People can see that we can see."

     The counselor spoke again, "First, let me give you my take on the definition for the term "blind." It's like the word or concept of tall. You know, when someone says you are tall, it has meaning to whatever it is you are talking about, but just the word tall, doesn't tell you how tall. So let me ask you...When kids or teachers react to you, is it your useable vision, the stuff that you can see that they are referring to?” After several kids answered, "No,” he said, "Right! It's the stuff you can't see that they are talking about. Then, it is your blindness that they are using to define you. It is the concept
of blind that is ordering their actions toward you, right? Blind here will then mean, like...Charles, can you see well enough to qualify for a drivers license?"

     "No. With my RP I can only see during the day and just straight ahead."

     "Okay, you are night blind and are blind to anything but what is straight ahead, right! Then Alison, earlier I heard you say that you usually couldn't find your friends in a crowded room. Why?"

     "Well, I can't see much past the end of my nose and so I guess I'm too blind?"

     "Yeah, right on. Wendy, when seated in class, do you think your classmates know that you are too blind to see to read what the teacher writes up on the board or on an overhead screen?"

     "Well, yeah."

     "Tom." The counselor said to one of the totally blind guys, "Does all this sound similar to your story?"


     The counselor said, "Okay you guys, we've also heard some of you say that there are times that you hide the fact that you are blind, right?” A number of kids agreed. Then he said, "I believe it is also true that some of you kids with sight have learned some non-visual alternative techniques and that you have chosen to not use them, right? And that sometimes there are activities that you will avoid doing because your sight isn't good enough to
handle it?” Again, some kids said "Yes." "So think of this, those of you who do not admit you can't see things and avoid dealing with your blindness are in a large sense doing to yourselves the very same thing that you say some sighted people do to you when they won’t accept and deal with your blindness! Right? And with that being true, let me ask you, if at times the sighted folks are against you and you don't even have yourself on your side, how do you expect to succeed?"

     Most of us looked sheepish and I know I felt embarrassed. Then, very quietly, the counselor said, "Come on. You guys are smart. Tell me how you think you can make it in this world if you are not a whole person? You have got to accept and master the side of you that is blind. You already know and use your sighted side. So to be at your best, to be whole, you need to develop all your skills, visual and non visual, and learn to love all of yourself. So finally, let me ask you, might you within yourself want to change what it means to be blind? Right?"

e-mail responses to

**1. That is a wonderful "Thought Provoker" because I believe I fall into the
categories described in this story. Is this a true story?

I too think I have a "sighted" side where I feel like I can get away with
acting like I have no sight problems. Yet, I also have the "blind" side that
sometimes comes out and makes me feel like a fool if I trip or can't see the
board at school (I'm in an MSW program at Rutgers University). I see well
enough where I don't use my cane, but I am unable to drive. I have learned
non-visual techniques, but don't use many of them. I guess I just got so
used to maneuvering my own way for nearly 30 years without having learned the
non-visual stuff that I just reverted back to my old ways, even though I
should probably be using my cane, especially at night or unfamiliar areas!

I wish there was more attention on the "high partials" like myself in rehab
programs and the like. Thank you for this thought provoker!!


**2. I went to public schools with sighted children. My experience was very similar to that described here. I had some useable vision, though not much, and often
pretended I could see more than I really could. I also avoided unfamiliar situations because I knew my difficulties might be more obvious. I hated using
a cane because I felt like it branded me as blind, and I felt that people treated me differently when they saw it. I didn't mind them seeing my CCTV because
most other students thought it was really cool, but I was ashamed of having to use a cane, and felt embarrassed about how different I looked when using
it. I avoided using it throughout high school, except during mobility lessons, and only used it for a little while when I started college.
I became particularly self-conscious in middle and high school. This is such a hard time because there is such an emphasis on fitting in and being like
everyone else and normal. Part of the problem with this was that I put a lot of stress on myself by denying something so real and obvious. My eyes look
different, so there was no way I could just blend in with everyone else. I also know I walked more hesitantly, and other things that made it obvious. I
can't read print without using a CCTV, and had to learn people's voices because I couldn't identify them by sight. All of these things are about being
blind. It was hard to feel embarrassed and ashamed of myself all the time, like I had some dreadful disease or something secret to hide. There was this
huge part of myself I had not come to terms with, and I did a lot of acting. I couldn't accept it for myself, so I couldn't talk to others about it. I
think I confused a lot of people this way because they didn't know what I could or could not see.
Though I was legally blind from birth due to ROP, I always used the term visually impaired. I hated to hear myself referred to as legally blind. I did not
think I was blind. That meant not being able to see anything. I remember getting very angry at my mom when I heard her use that term when talking to someone
about me on the phone one day. She was seeking information or services about something blindness related. She told me that that was the term used to describe
me and that I would have to eventually get used to it and accept it.
When I made some blind friends after going to a summer teen program for visually impaired teenagers, I was able to talk more with them, but it was not until
late college that I realized my sighted friends could understand a lot of my concerns when I needed to talk about them. Previously, I thought they would
not be able to identify with some of the things I talked about, or that they would just feel sorry for me and not know what to say. This greater degree
of openness only came after I realized we could all share and understand about a lot of different things in each other's lives so it was a gradual process
of learning to really trust my friends. This meant sharing my sense of humor with them too, since some really funny things can happen when dealing with
blindness. I still think I talk most openly with my blind friends about blindness related stuff, but I mainly operate in the sighted mainstream. This is
by choice. I have chosen to work in a setting with sighted people, not with others with disabilities.

I am comfortable in my own skin now, and am not ashamed of my blindness. It is just another dimension of who I am. If it needs to be discussed, it is discussed.
I don't hide it or try to deny it. I simply operate within it, finding ways to do what needs to be done. Coming to this place took time, though, and happened
as I became more comfortable with myself in other areas of life, me as a whole person. This means I can approach it with humor and skill. Having learned
coping strategies is so important.
I could say more, but these are some initial thoughts.

Carmella Broome
Graduate student in Marriage and Family Counseling/Therapy

That's a no-nonsense article and thanks for sharing it. Some of us who are so intellectual and some of us who are so pseudo-intellectual can learn allot from the responses of these teenagers who have been partially sighted at such a young age. It is a time when young people are looking forward to
the excitement of new discoveries etc. and they find that they have major challenges before them. If the sighted are so partial to the sighted then where will the visually challenged stand ... especially when we are so critical of each other .... we need to stand together and support one another in any way we can ... never tear each other apart ... especially in the light of the contemporary scientific endeavors on our behalf which curatively speaking are just around the corner. We must never call each other names but take a good hard look at ourselves and help one another, encourage one another in any language we can so we can be worthy of what's coming. Thanks again for that 'thought-provoker'.

Best regards, Steve Chaiet (Rplist)

**4. The only time I can remember actually passing or trying to pass as a fully
sighted person was during some college adventures. I love to dance, but
appearing with my guide dog in hand usually meant sitting on the side lines
or chatting with other wall flowers and shy young men to afraid to ask
anyone to dance. So, I sometimes went to clubs with girl friends and
pretended that I just couldn't see well because I had just broken my
glasses. I carried a broken set around and asked my partners to be sure to
take me back to my friends after a dance as the lighting and my lack of
glasses made that hard for me. I don't know how many I actually fooled, but
I did get to dance more and since I didn't intend to see my partners again,
it was just a way to get to dance more and hang out with my girl friends.
Of course, since I am totally blind, the whole charade was just that. After
becoming engaged to a non-dancer, I just gave it up completely. I don't
think even in those days I was particularly denying to myself that blind was
who I am. Just as I didn't deny that I am Native American, reasonably
bright, not a musician, poor in math but have a good sense of humor. I am
me and all of it is a part of that whole including the blindness. I tell
young people trying to find out what that means that it is better to use
that cane than to trip off curbs and have others assume you are drunk,
stoned or just clumsy. People will categorize you no matter what you do.
It's human nature to put labels on things. So, they will define you as fat,
thin, tall short, smart, pretty, plain and blind too. Since you can't
change that, you need to accept it and move on to discover what else might
apply to you. It goes back to accepting the things you can't change and
working on those both positive and negative that you can do something about.
That way, you find out what else is in the package that makes you unique.

DeAnna (Quietwater) Noriega

**5. Perhaps this isn't right place to vent, but others here seem to have a
better handle on life than I do.
Ok so I'm 36 years-old. I have acquired every blindness skill that I am able
to find and. I have sighted people complain to me that they forget I'm
blind, even though I have trained them from day one on how to successfully
interact with me. I manage to forget that I am blind most of the time, but I
still get so extraordinarily frustrated by my difficulty in finding
solutions to things like long term transportation and interacting in groups.
I know that if I had better social skills getting people to drive me around or ask me to a party might be less of a problem. As I get older I find I want quality over compromise to my blindness, so I gave up my independence
in a city environment to live in a rural area setting. I love where I live.
I still get exasperated by the fact that I can't drive a car or deal easily
with a group of people. Maybe my frustration stems from the fact that I went
blind after having 20-20. Maybe it's from just wanting to be able to go
somewhere without having to plan a 30 min. trip weeks in advance.
If any one has any ideas for accepting the anger I'd love to hear them.

Aggravated in NJ

**6. This thought provoker represents and touches on one of the biggest and most difficult aspects of RP, for teenagers and adults, imo. I feel compelled and "provoked" into putting some thoughts down. What follows is my opinion and is just the opinion of one man with RP. Some of my comments may not make total sense to others in different stages of RP. The following is simply my reality regarding RP, and should be taken as simply one man's opinion.

Most RPers spend some portion of our lives thinking we are fully sighted people. We define ourselves as fully sighted people, and have adapted and learned to understand the dominant sighted culture. Sight is comfortable
for us and it is what we know.

Then along comes a diagnosis of RP and our entire construct of life as a
sighted person is assailed and threatened. All of a sudden we have been
delivered a life altering diagnosis; sometimes with compassion, sometimes
brusquely, and sometimes with a foreboding prediction of eventual blindness.

For most of us, this diagnosis of a strange sounding retinal disorder is
HUGE. Some of us spend years in denial, hoping RP won't affect us and we
won't have to deal with vision loss issues. Eventually, there is no hiding
or denying RP, and we have to pay the piper. Some of us dig right in and
learn all we can about RP and seek knowledge and conventional wisdom about
coping with RP. Some spend years trying to get an accurate and definitive
diagnosis from well meaning but ineffective Ophthalmologists. Still
others have spent their lives watching relatives with RP.

Those relatives and how they do or don't cope with RP have a HUGE impact on
RPers who have been watching them for years. If their blueprint for
handling RP is good and healthy, the new RPer has a much better chance
to thrive and do well in adapting. On the other hand, if the relatives
collectively deal poorly with blindness, ignoring the tools of blindness,
dismissing blindness agencies as "for the blind" and not for them,
then unless the newly diagnosed RPer recognizes and makes a Herculean
effort to break out of this negative construct, their road will be long and
more difficult than necessary. Any parent of children who genetically are
possibly going to have RP has the knowledge and burden of knowing how they
handle and deal with RP will greatly influence their offspring and future

When we do come to realize and acknowledge that we have this condition
called Retinitis Pigmentosa, the adaptation or lack of adaptation begins.

Having spent our lives as sighted people, now we are faced with the
monumental idea of having to consider changing how we view ourselves. This
is truly daunting, disturbing and threatens us right down to our very
core. This notion of having to reconstruct who we are is one of thee most
difficult and terrifying aspects of coming to grips with RP.

The thought provoker said, "You have
got to accept and master the side of you that is blind. You already know
and use your sighted side. So to be at your best, to be whole, you need to
develop all your skills, visual and non visual, and learn to love all of
yourself." That quote, imo, is right on and deserves rereading.

The transition from "sighted" to "blind" is very difficult, and
challenges our egos, our self-esteem and our self-identity right to the
essence of who we are.. We can spend years or entire lifetimes trying to
or avoiding making the transition from sighted to blind. IMO, this
transition is one of the most basic or core issue in dealing with RP.

In the beginning of a journey with RP, we can ignore this transition
because we can be "passers" or people who try with every fiber of our being
to pass as sighted. This works for months and even years, until we fall
too many times, or have too much trouble out in public looking drunk,
drugged, or dim witted. We fumble around as a less than competent sighted
person, in our effort to avoid learning blindness and blindness tools.

This period is typically a very rough time for us as we struggle mightily
to hold on our self concept as sighted. We know we are having trouble out
in public, and many at this point go into a "hermit" phase of RP, holing up
at home and not venturing out unless necessary. Engaging the world is way
more difficult at this stage, because mobility is harder and we miss a lot
and stumble too often. At this point, sometimes we get mad at ourselves
because of the constant reminders of how poorly we are doing as "fully
sighted" people.

This period can go on for a long time... decades in some cases. Some
RPers try to maintain this passer status for a lifetime, creating enormous
anxiety and personal turmoil.

The thought provoker says, "and learn to love all of
yourself." This is very difficult to do if we view blindness as the enemy
or something we just aren't going to deal with. Of course it isn't fun,
and of course it disrupts our lives, but eventually we get to a point of
acceptance and realize it is what it is and it ain't goin away. How can we
love that part of ourselves that is blind? How can we accept that life
altering, ego altering, self-identity altering aspect of who we now are,
when it causes us and has caused us so much grief, turmoil and disruption?

In my opinion, when we are able to integrate blindness fully into our
self-image...when we can utilize blindness tools with competence and
alacrity without a sense of shame or taint, then we are getting to the end
of the five stages of vision loss...acceptance.

Some RPers tend to regard acceptance as failure or undesirable, and fight
this concept for all they are worth on a daily basis.
Acceptance does not need to imply giving up or "giving in to RP" but rather
becoming a whole person again by acknowledging all the components that make
us who we are. When we get to the stage where we view ourselves as
integrated blind people, and are able to incorporate blindness into our
self-identity in a non-negative, harmonious way, anxiety and turmoil are
greatly reduced and we are more able to reemerge, regain and reclaim
portions of who we were before RP.

Tom Sykora aka LifGrd Rplist

**7. Tom:

I'd like to join Don and Carolyn in commending you on your well written
wisdom. Lisa has been trying to get me to contribute precisely that
sentiment to the list for some time now, and you've done it for me -- and I
think you've done much better than I could have.

Like Don, I've gone through the stages and I'm now a pretty well-adjusted
blind man.

I am one of those who have watched relatives with RP and I've known all my
life that I would be blind some day. I consider this a great advantage and
feel fortunate to have at least known what to expect. Not only did I have
my family to observe, but I was lucky to have gone to a technical college
where there is a great visually impaired persons' program. I was able to
observe many blind people, from those who were born blind to those who have
lost their vision suddenly to those who have multiple disabilities. I've
seen people with excellent blindness skills and many examples of what not to
do, and I've learned much from both.

I have 2 brothers and 2 sisters. One brother and I had RP and wore the
thick glasses as far back as I can remember. My dad was very uncompromising
in his belief that my brother and I were not to get any special treatment
and were to be treated the same as the other 3. He took a lot of heat from
other family members for this and, in contrast, my cousin was pampered by
his parents (my mom's sister and her husband). My brother and I went on to
college and are now employed, whereas my cousin is in his mid-forties and
still living at home. His life consists of sleeping until noon and sitting
around the house until after dinner when his dad takes him to his favorite
pub. When we were kids, I was jealous of him; now, I pity him -- and I hate
to be pitied.

Bottom line: RP is a very difficult thing to live with, but there *is* light
at the end of the tunnel if we don't limit ourselves by fear, frustration or
the ignorance of those around us . Sometimes all we need is a good kick in
the butt.

Greg RPlist

**8. WOW, That hits home with me. I find that I use my blindness when a situation makes me uncomfortable but become offended when family and friends try to
help when I can see.
Having RP is hard for me because I refer to myself as the seeing blind. I can see well enough to read, write and do daily activities. Sometimes when I
use my cane I worry about what people think when I come into a restaurant using a cane and then pick up the menu and read it without assistance.
Maybe if society didn't put so much emphasis on being "normal" these kids and all other with disabilities wouldn't have to struggle as hard.
Thanks for the great thoughts,

Tracy in NC

**9. Oh, that is really cool. I am going into doing therapy, and was wondering if you would mind if I send this to a few therapy lists, and a few soon-to-be therapists who could one day potentially work with those with disabilities?

Chris and Nessie!

FROM ME: I Wrote her and this is what I said- "By all means, send this new THOUGHT PROVOKER to anyone you wish; let them
know where it comes from. Okay.

**10. First, I like how the counselor compared general definitions of *blind* to someone describing themselves as being tall and how *tall* mean different
things to different people. I'm 5 1. While most tall people seem me as short, most of those who are 5 7 and under see me as average height, neither too
tall or too short. Of course, in this sense, at least in my personal experience, there doesn't seem to be a distinction between being too blind, too sighted,
or just right in the middle among sighted people when it comes to thinking about blindness. The only time, however, that I've heard sighted people say
that someone is too blind to do a certain task or be part of a particular group is due to ignorance and/or prejudice.
While I knew that there was no way of denying that I was blind because I read Braille and had books on cassette and in Braille, I often refused to use
my cane except for during my mobility lessons, going to the store for my parents, or walking to school. I used whatever I could of the little vision I
had to navigate around despite the many close calls of falling or misjudging the distance I was from something in front of me. Such was one case in third
grade when I slammed into the classroom door with glass panes in it and ended up shattering the whole bottom half of the door. With the exception of the
first three months in junior high school where I had no choice than to use my cane because of my classes being scattered from one end of the building to
another and on different floors until I was moved to a smaller junior high school for the rest of seventh and eighth grade, this whole thing of refusing
to use my cane lasted until high school, where, again, I had no choice than to use my cane due to the same kind of situation as in the first three months
of seventh grade. Ever since then, if I walk out of my house without my cane unfolded, I feel naked without it. This is not to say, of course, that high
school was always easy in admitting that I had no choice than to use my cane, as there were times when I would be walking down the hall and someone would
be trying to jump over my cane. this bit of people jumping over my cane often brought back the tougher times when I was younger when kids would laugh
or say watch out to each other or to me even though in high school was a whole different ball game--people not laughing at me or telling me to watch out.
If it wasn't the feeling of being branded as the inevitable being blind when using my cane, I was often, and still am from time to time, asked by little
kids what happened to my eyes or what that spot is on my eye. This not only embarrassed me because I often didn't know how to explain the situation in
terms they could understand at their cognitive level of understanding, but I got to wondering whether other people, adults in particular, were seeing as
much of my eyes as little kids do and how far away the scar tissue in my left eye could be seen. I still had sighted friends, but I made it a point to
make eye contact but not as directly as what would be expected of other sighted people so as to hide my left eye. I wasn't ashamed, though, of explaining
what I could and couldn't see. It wasn't until my husband, John, and I got together that I found out that most people don't realize that I'm blind until
they see me pull my cane out. My first tip off of this was when he told me that he saw me out on the dance floor all by myself at one of the parties at
the university. He never knew that I was blind until I came up on him after another party on my way back to my apartment. The next tip off was two days
later when we were discussing my blindness and I happened to explain the scar tissue on my left eye, thinking that he'd probably seen the funny white spot.
He was shocked at my bringing up my scar tissue; not because the scar tissue shocked him, rather, that he never saw the funny white spot so wasn't aware
of it until I brought it up. Of course, I didn't believe him for awhile until people would see us in public where they would see his tall stature first
before they saw me with my cane.
Without continuing on with a bunch of rambling , I'll conclude here that I think that defining yourself as blind, legally blind, visually impaired,
or whatever, and your negative or positive emotions behind it has a lot to do with the kind of people you're surrounded by. If you're surrounded by people
who see blindness as a detriment, then your feeling of being cheap contributing to a low self-esteem will be attached to situations where you're discussing
about your blindness. Such as in the case of explaining to little kids about my blindness and the funny white spot that they manage to point out in every
conversation. I was made ashamed of what I looked like; therefore, anything that someone saw as abnormal often made me self-conscious about myself, including
about things I had no control over. On the other hand, if you're surrounded by people who see blindness as an asset, often forget that you're blind, or
just see your blindness as just another characteristic equivalent to being 5 1 with wavy black hair, then there's either no emotional attachment to explaining
about your blindness or you're proud of yourself as you are regardless of what others think bad or good about blindness and being blond.

Linda USA