• Transportation frustrations May 17 - 11:17 pm
• Teenager with Nystagmus June 14 - 06:56 pm
• Driving with BiOptic Telescopic Systems April 9 - 06:18 pm
• I am having a problem at work March 17 - 02:31 pm
• Does anyone know a famous successfull person with the condition May 10 - 02:10 pm

Subject: Teenagers and Careers



In recent weeks, there has been a noticeable increase in the number of posts
from teenagers with nystagmus. Understandably, they are concerned about
driving, dating, friends, and finding their way in a world that is often tough
for kids who do not have visual problems, but really rough for those with
nystagmus. From time to time, their concerns have been discussed on this list,
but there is an important aspect of teenage life that has been largely
overlooked -- preparing for jobs and careers.

When I left school, I was woefully ill-prepared for the real world. Without
guidance or counseling of any kind, I failed to understand the limitations my
nystagmus imposed, and in my twenties, I failed at nearly everything I tried.
Sooner or later, my eyes were my downfall. Well, obviously, I survived and
recovered, but the horror of those years still haunts me. It is evident, from
the caliber of the letters on this list that most of you have managed
successful careers despite nystagmus. I think your advice to teenagers, many,
no doubt, neglectful of the future, could be extremely helpful to them. I also
feel that the response of teens and their parents would contribute
significantly to that end

Jerry JERRY63@aol.com

I'm here to say that nobody seemed to be able to advise me on career choices
during that crucial time. I hope those with kids of their own will take some
time to think about how they will guide their kid's.

Milo drmilo@neocomsystem.com

Subject: Re: Teenagers and Careers



EXCELLENT suggestion Jerry.
Perhaps a "This is my career and why I chose it" discussion board on the
website?
Jerry, would you like to monitor it?
I don't have N and have never been around anyone with N before my baby boy
was born, a little less than 11 months ago, so have no more to add from a
first-person perspective. As a trial attorney and casual student of
non-verbal communication, however, I can say that one of my biggest concerns
for my son's future is how he will deal with a world full of people who
subconsciously gather 90% or more of their information from non-verbal cues.
In the wider animal kingdom, even a higher percentage of communication
occurs non-verbally, so it should hardly be questioned that humans still
rely to such a large degree on non-verbal communication, despite the inroads
technology has made in the last generation.
How well will my son be able to perceive non-verbal cues from the people he
personally interacts with, face-to-face (excuse the expression - can anyone
think of a better one?)?
How can I improve my son's non-verbal communciation skills when his frame of
reference is probably limited?
Do you know for instance, that failure to maintain eye contact is a huge
faux pas, and indicates dishonesty? Or that looking at someone sideways
inidcates sinister intent? Or that looking down your nose at someone
indicates snobbery? Or that looking up at someone indicates submission?
Think about it, all ye fully sighted ones. Aren't these conclusions you jump
to without even realizing it?
Obviously these unintentional non-verbal cues given by Ners with off-center
null points can be minimized through education of fellow man, woman, teen
and child, and to some degree by self-restraint and compromised vision. But
in any line of work, I suspect that persons with N have to make a ten-fold
effort on understanding body language and modifying their own natural
inclination and visual needs to suit the world around them. Totally unfair,
but perhaps a key to success?
Anyone out there with N have anything to say about this?
-Vicky vvaught@sccoast.net

Dear all,

I to had trouble with the career bit. I spent 3 years in college
getting 2 Associate degrees in Automotive repair. I spent another 3
years trying to work in the car repair fields before I decided that my
hand/eye coordination was to bad to expect to make any kind of living at
it. So I am back in school becoming an Occupational Therapist
Assistant. I feel that my experience of having N will give me some
insight into helping others live with their disabilities.

So as a suggestion to those teens looking for careers look toward a
career where your N can be a reference or insight to helping others.
a few suggestions could be eye doctor (practice or research), teacher,
social worker, Therapist, guidance councilor, and many more as the
imagination can come up with.

Oh by the way I am doing a paper on nystagmus for a class and would
apprecieate any help or advice on sites for information.

Thank You

Greg Johnson greg_g_johnson@hotmail.com

Subject: RE: Teenagers and Careers



I think it's a great idea, too.

I know I got no more direction than the average kid when I was growing up.
I think because I got good grades and because there was so little
information available to them, my parents and school administrators figured
I'd be fine. Unfortunately, academic performance isn't the sole indicator
of later success. My insecurity about my vision kept me from taking part in
a lot of extra-curricular activities that would have helped me build
leadership and interactive skills that, in turn, would have been invaluable
in my work life. So I have a BA in Communications and an MBA and I haven't
had a really satisfying job yet.

I can't say that I failed professionally, but I can say that I often failed
to try because I'd developed the conviction that no matter what I could do
someone with normal vision could do it better. This feeling was exacerbated
by the fact that most of my interests lay in fields like television, where
my low vision would be a huge handicap. I'm trying to make up for that now
by pursuing my long-time dream of doing stand-up comedy. I never allowed
myself to believe that I could do such a thing before. Funny, although I
still have trouble gathering the courage to walk up to a single stranger to
start a conversation, I can get up and do comedy in front of 1,000 people
without thinking twice about it.

On the practical side, I've had the continuing problem of finding ways to
assimilate all the information needed for the jobs I do. My eyes tire very
quickly when I'm reading business material and I find it hard to get a
handle on what's going on around me. (I'd love to hear any creative
suggestions on this myself.)

As painful as having N was to me when I was in school, the thing I regret
most was not testing my limits more and actually finding out what I could
and could not do rather than making assumptions and ruling careers out
without even investigating them. We've all encouraged parents to let their
younger kids play ball and take part in other activities to find out what
their abilities are and this is really no different. I'd encourage the
teens on the list to check out whatever careers interest them and not to be
afraid to find out they can't take part. I'm only just learning myself that
you can get things out of the process that can lead you in different and
better directions.

So much for my philosophizing. Hope this is of some value.

Chris Maltby

cmaltby@casey.org

RE: Teenagers and Careers



You bring up some good points, Vicky. Even though I have N, people can
rarely see my eyes wiggle and I only use my null point when reading things
far away, like overhead slides or white boards. So, hopefully some of the
other members will chime in.

Statistically, we form our first impressions within the firs 7-11 seconds of
meeting someone. All the things you mention about eye contact and body
language are true; however, I think there is something left out of the
statistics. For lack of a better term, I will call it the "shock factor". I
don't think it has been measured, but I have recently discovered (from
advice I receivied on this list) that when I meet a new person that is going
to be important to me, I have to be open about my situation. I do this
because there is little chance that I will recognize them the next time I
see them, but I think the concept applies here as well.

So, the "shock factor" is when you open up with someone right away. You say
to them how important you value the relationship and then give a really
non-detailed, easy to understand, sentence about why you look or act the way
you do. It immediately turns all the nonverbal stuff into verbal
communications. It won't work for everyone, but the one human factor that
most of us has is compassion, and that's what I've found happens most of the
time when I open up. Immediately, the other person feels a sense of relief
because they are made to feel comfortable about the awkward situation. They
will also remember you, and will remember that you are proactive, not
passive.

Of course this won't work with everyone, nor is it appropriate behavior for
everyone we meet. But, using it when it is important can make the difference
between getting a second job interview and being passed over, etc. And,
interestingly enough, being proactive in this way is generally viewed as a
GOOD trait, as long as the presentation makes the other person feel more at
ease. One thing is for sure - you'll be remembered!

And as for the nonverbal body language stuff, I think most of us N people
can pick this up even better than the average person. Since our ability to
see details is limited, we are already programmed to look for nonverbal
cues. I frequently recognize people that are really far away faster than my
friends. This is because I am already programmed to watch for mannerisms,
gait, clothing styles, etc. Most nonverbal body language is in the form of
large gestures - the way a person holds their arms, if they fidget, etc. The
facial features are also a clue and might be missed by some N people, but
the big messages are sent with the whole body.

Does anyone agree with any of this? Is it useful? Food for thought anyway.

-Karen

kbell@pobox.com

Subject: RE: Teenagers and Careers



Karen,

I think you make some very good points - especially about being open right
away. Of course this is the hardest thing for young people who want more
than anything to be like everyone else rather than flagging their
differences. I still feel odd sharing this information about myself, but
I've never had a negative reaction when I've done it. My N doesn't maifest
itself externally so much so my big revelation is usually to tell people
that if I don't acknowledge them on subsequent meetings it's not that I'm
rude and that they may have to be the first to say "hello."

I agree with you on the non-verbal communications - partially - as well, I
know that when I have been able to recognize people from a distance it's
been almost entirely based on stance and mannerisms. On the other hand, a
lot of those non-vebal cues are facial and aren't readable to me beyond four
or five feet. I remember being on vacation with a group several years ago.
One of the guys was EXTREMELY non-verbal. I was always frustrated that his
version of "good morning" was a glance and a slight head nod. I NEVER knew
what was going on and - unlike now - I was too embarassed to ask him to
speak.

Chris Maltby

When I was in seventh grade a teacher asked me what my career goal was. I told
her that I wanted to be a doctor. She reacted by telling me that because of my
vision I could never make it through medical school. Since then I have heard
of blind people who have become doctors. The result of her comment was that I
began to lose interest in school since I had lost my big goal. Maybe I would
not have made it to med school, but I might have gone into pharmacy or some
related field.

Sometimes one seemingly insignificant comment can change a life.

Steve

abe3849@aol.com

Subject: RE: Teenagers and Careers/verbal nonverbal comm.



Hey Folks
Careers are tough to counsel. No bones about it. I tried many things -
like Jerry (?) - and found my eyes got in the way. I was steered towards
manual trades for an entire lifetime by a father with a 3rd grade education
who believed all people do not need to be educated. Even though I cannot
see what my fingers are doing. I tried automechanics - same story - tried
lots of stuff. Ended up as a Journeyman Carpenter after serving a 4 year
union apprenticeship. Couldn't keep a job because I'm too slow - have to
take too much time to do the same job as a fully sighted person.
Contractors want fast - good doesn't count so much. So - I was mostly
unemployed - or underemployed. Did a whole bunch of temporary labor type
stuff - sux. Finally - after seeing a psychologist for most of a year to
be treated for major depression - I entered university to become a science
teacher. Most of you know I'm now certified to teach for life in teh great
state of TExas and graduated with honors.
I'm really sorry I didn't have the gall to go and do well in school so I
could have saved a lifetime of agony trying to do manual labor. 'Bout all
I'm good for on the construction site is to be "the human forklift." -
brute dumb labor. All I'm good for as a teacher is the be the example and
guide for our next generations. I hope I'm up to it. Hardest job I've
EVER had - and I've had a bunch.
Speaking of kids and being upfront with the N thing - I told all my classes
that I have a birth defect which causes my eyes to move and as a result my
vision is poor. They accepted it pretty well. I laid out how I want their
work to be written - skip lines, don't use neon colored pens, don't use a
bunch of flowery flourishes, write big enough to see. If I can't read it ,
it's wrong. They seemed to accept it pretty well. I also tell them to
talk to say yes or no because I can't see their heads move to nod or shake.
"Say the word - I can't see your head move." And they either use
exaggerated head movements or say yes or no. They're getting used to my
terrible handwriting - which I use constantly and it's improving somewhat
with practice. I'm having a hard time with some of the ones who write so
small that it looks like a line of dots.
Point of all this is - don't give up on yourself - try everything -
especially if its bookish. I'd recommend a career in eye research or in
helping people cope with their disabilities. Somebody said that already.
Better get off the soapbox - I'm starting to plagarize.
cYa
SAm
cYa
Sam
Better get off the soapbox now.

smelwelo@WHC.NET

Subject: Re: Teenagers and Careers




i don't have much to contribute on this subject except i have a question
if anyone on this mailling list with N has had a job at a fast food
place annd how it worked out cause i have an interview tomorow at a fast
food place and i hope i'm not digging myself in a big hole
thanks
philip

koos81@hotmail.com

Subject: Re: Teenagers and Careers



Philip

I worked at two different fast food restaurants. One for a year and a
half when I was in high school, and the other all through college
and for a while after. The only problems that I can recall having
because of my low vision was at the last place the orders for the
sandwiches were on tiny cash register receipts and we were
supposed to be able to read these posted high on a wall. I couldn't
do it so I tried to listen carefully as the orders came through on the
speaker. Fortunately they didn't put me in this position often. I
was more proficient at other tasks like running the cash register. I
later went on to be a shift leader and was asked to be assistant
manager, but declined.

Not knowing how your N affects you, I cannot say for sure, but if
you are a fast worker that does not goof off you will be light years
ahead of the majority of fast food workers I have come across.
Good luck with your interview and let us know how it turns out.

As far as career guidance for those with N, I would say don't limit
yourself. No, you may not be able to be a jet pilot, but
accommodations can be made so that almost any career is within
your reach if you want it badly enough.

Susan Chesnut

schesnut@advant.com

Phillip, you NEVER dig a hole for yourself by trying, but you can dig huge
holes by NOT trying!

I hope things go well for you today . . . good luck!

Regards,
Terry Josephson
Winnipeg, Canada
josephson@writeme.com

Subject: RE: Teenagers and Careers (very long)



On Thu 10 Sep, Chris Maltby-Seattle wrote:

>On the other hand, a lot of those non-vebal cues are facial

We in the UK have had a second chance (I know this because I heard some of
it before) to hear a series of five programmes (15 mins. each) put together
by our Disability Affairs Correspondent, Peter White.

Peter was born totally blind and grew up in schools for the blind but he was
probably one of the first totally blind people to get to University and get
a degree before getting into journalism.

These five programmes have been his views on everyday life and how people
view us VI, but recorded 'live' as he went about his daily business.

I found the last one - today - particularly interesting as it was on the
subject of 'parties'.

The particular party was being held in our 'House of Lords' (upper House of
Government). Can't remember why exactly. Peter showed many of the problems
we have in socialising : such as (oh, and I should say he's married to a
sighted lass and has several children, one at least is fostered): hearing a
woman's voice whom he 'fancies'. How can he chat her up? Several times he
tries to get to grips with this but is foiled each time. He doesn't know
beforehand who will be at this gathering I think, so has to rely on memory
and voices. He meets someone who only wants to talk about 'disability', a
lady with whom he did an interview not long ago (only he can't quite
remember what the interview was for): eventually she's considered to be his
'escort' and has to be trapped with him holding his glass of wine while he
has his edibles. We have a running commentary on the type of food being
offered and the good and bad ways in which this hampers the VI in these
situations. How it is described and offered to him: at one point someone
actually puts a piece of food into his mouth!!! Also the good and bad ways
in which he'll be trapped at a party and will be at the mercy or otherwise
of other party-goers. I think the saddest bit (the only bit in fact) was
when he met our totally deaf MP Jack Ashley. He cannot 'read' Jack's facial
signals, Jack cannot lip read Peter as Peter is inconsiderate enough (his
words) to have a rather thick and hairy moustache: which I can vouch for
having met him several times. They were unable to communicate effectively in
such a noisy environment and had to give up totally. Peter had recorded all
the party bits and then, I think, dubbed in his comments over the top
afterwards as one could hear various bits of dialogue going on at the time.

Two of the other programmes were devoted to Peter's favourite leisure
pursuits of football and going to the theatre. He went to the theatre with
his publicity assistant, he chose what they would see, but it turned out to
be almost useless to him as there were too many 'gaps': he got a lot of flak
from members of the audience because his companion filled him in on the
plot, etc. in audible whispering. (Yes, he could attend a few performances
which are audio described but that was not the point of the exercise). It
was rather a bawdy farce I think and unfortunately Peter lost most of the
best of the bawdy bits as they were visual rather than vocal. His companion
didn't explain it too well (a female), nor did another friend he met (male)
so Peter had to sort of put the two pieces of info together and make a
reasoned conclusion which it sounds like he got right - but by which time it
didn't sound too bawdy.

He's also known for his love of footie (the English sort) and supports his
local team who are near the top of our league. He demonstrated really well
what a VI person gets out of a match - and how he does it. In this case he
took one of his teenage sons with him (think that son is about 13) plus his
ever present Walkman radio on which he was able to hear a radio relay for
when his son got fed up/to engrossed to commentate. I know plenty of blind
people who do go to matches and I think I can see why they do it.

He also did one on travelling on public transport which I associated most
with since he was travelling over some of the same area as I use from time
to time. That was poignant. People would help him on and off escalators or
through ticket barriers (in London these are automatic so you need to know
that you're using the right ones, and, yes, you can go via a ticket
collector but you need a degree of sight to find the manual exit). People
would even take him to a platform - but they would then assume that once
through the doors he could find a seat - which is exactly the bit he
couldn't do! This also happened on main line trains and on buses.

I can't remember what the 5th one was: what Peter was demonstrating
throughout was that the totally blind can do the things that others can, and
do them independently, and with a sense of humour, but that if people would
think a little more ahead of themselves and considerately life would be even
easier for us.

Oh and its title? Blind man on the rampage.

I said to Mike afterwards, I'll have to be very careful when I next meet
Peter as I'll be wondering does he think I'm a bore, does he really remember
me? (He did remember exactly the occasion I first met him, last time we met)
- or am I just chatting him up becase he's famous?

Since he's the same age as my Mike, he's a good role model for visually
impaired people in 'middle age' in the UK: I wonder what his school mates
think of him? (I don't know anyone of the right age who went to the same
school as he did).

Sincerely, Chris

--
Mrs. Chris McMillan. Tel. 0118 926 5450. e-mail:
chris@mikesounds.demon.co.uk http://www.mikesounds.demon.co.uk/Family.htm

Subject: RE: Teenagers and Careers



On Thu 10 Sep, Chris Maltby-Seattle wrote:
> I think it's a great idea, too.
>
> I know I got no more direction than the average kid when I was growing up.

Absolutely none at all, but then we weren't expected to do much more than
get some sort of menial job, unless we were exceptionally gifted! Then
perhaps social work with the blind or physiotherapy if one were
scientifically minded.

>
> I can't say that I failed professionally, but I can say that I often failed
> to try because I'd developed the conviction that no matter what I could do
> someone with normal vision could do it better.

Absolutely - I definitely still think like this, which is probably why being
only a housewife is bad for someone who's disabled.

> Funny, although I still have trouble gathering the courage to walk up to
>a single stranger to start a conversation, I can get up and do comedy in
>front of 1,000 people without thinking twice about it.

Make that nearer a couple of hundred and I'm with you there: in fact I think
it quite hard to go up to people I've known for years, never mind total
strangers.

> As painful as having N was to me when I was in school, the thing I regret
> most was not testing my limits more and actually finding out what I could
> and could not do rather than making assumptions and ruling careers out
>without even investigating them.

Even in the mid-1960s when I was growing up, someone who wasn't very bright
with a visual impairment was better off than those of us who were supposedly
clever. Those with less brains were given job opportunities before leaving
school, even though it wasn't where they lived, they had a couple of weeks
working in factories or in sheltered workshops for the disabled (we had
about 50 pupils in our school who were physically and/or had learning
difficulties as well as the majority of us with visual impairments). The
rest of us went without and did the best we could - often to our detriment.

> I'd encourage the teens on the list to check out whatever careers
> interest them and not to be afraid to find out they can't take part.

I read an article in a magazine for parents with visually impaired children
in the UK not long ago about a student training to join the medical
profession, which is almost unhead of here. More and more opportunities are
opening up at long last: I think having a Minister for Education who's
totally blind (David Blunkett) and a BBC Correspondent for Disability who's
also totally blind (Peter White) has done a lot for the visually impaired.
We've had other ministers for the disabled in the past who've been disabled
in some way: total deafness comes to mind, there's also a lady who's
wheelchair bound in parliament which does give encouragement to others, but
on the whole its the inability of companies to adapt their premises or
provide accessible information that prevents people with disabilities
getting and/or keeping jobs.

Sincerely, Chris

--
Mrs. Chris McMillan. Tel. 0118 926 5450. e-mail:
chris@mikesounds.demon.co.uk http://www.mikesounds.demon.co.uk/Family.htm

n Thu 10 Sep, Gregory Johnson wrote:


> Oh by the way I am doing a paper on nystagmus for a class and would
> apprecieate any help or advice on sites for information.
>
web site: http://www.btinternet.com~lynest/nystag.01.htm

for starters.

Sincerely, Chris

--
Mrs. Chris McMillan. Tel. 0118 926 5450. e-mail:
chris@mikesounds.demon.co.uk http://www.mikesounds.demon.co.uk/Family.htm

On Thu 10 Sep, Karen Bell wrote:
> You bring up some good points, Vicky. Even though I have N, people can
> rarely see my eyes wiggle and I only use my null point when reading things
> far away, like overhead slides or white boards. So, hopefully some of the
> other members will chime in.
>
> Statistically, we form our first impressions within the firs 7-11 seconds of
> meeting someone. All the things you mention about eye contact and body
> language are true;
>
The idea of non-verbal body language is something that is comparatively new
in the UK and its known that we don't know much about it if we're VI. I know
that the younger person is taught about it as part of growing up, (and I've
seen articles about it in mainstream magazines) but HOW do you learn to
project yourself positively for heavens sake! The more I read about it, and
the worse my reading vision becomes, the more I'm beginning to think that I
may be portraying myself poorly. I have a feeling that the more I hunch over
to read the more I hunch over to walk or stand: I know I've lost some of my
precious height due to age probably (used to 5ft at a whisker, now its 4ft
11.25in. standing straight. That hurts I can tell you!

Sincerely, Chris

--
Mrs. Chris McMillan. Tel. 0118 926 5450. e-mail:
chris@mikesounds.demon.co.uk http://www.mikesounds.demon.co.uk/Family.htm

My dad said it like this:
"He which tooteth not his own horn - the same shall not be tooted!"
Apropos - No?
Cya
SAm

Subject: Re: Teenagers and Careers



Phil
Long ago - I worked at a fast food place called "Whataburger" - it wasn't
too bad. It's easy doing food work - however - you need to be careful about
knives and such. Observe all the safety rules.
Don't mention your disabilty unless they ask. Be agreeable - volunteer no
information - don't speak unless asked a direct question - answer the
question without volunteering info.
Should go OK
Good Luck - let us know how it goes.
CYa
SAm

Re: Teenagers and Careers



phillip, I worked at McDonald's and loved it- for a while. All these fast food
places have systems, and they train you so that it is hard to mess up.
Everyone makes mistakes, and the managers will tolerate mistakes if you learn
from them and don't make the same one twice. Be on time, dress properly, have
a positive attitude; and i know you'll do well.

biggest problem I can forsee is transportation. I rode my bike to and from
work. restaurants have odd hours , and public transportation might not be
practical. Also,
often I had to work a split shift- work lunch for a few hours and then leave
and return a few hours later to work another shift. If you explain your
transportation problems to the managers up front they will probably try to
arrange your schedule so travel will not be a hardship.

good luck!

Steve

Re: Teenagers and Careers




hey sam i don't understand why i shouldn't volunteer any information the
more they know the more they might try to help me work around
this(probably to the point of anoyance but still they'll mean well)if
don't tell them and they tell me to do somthing i can't do then i will
be in trouble

Philip

Subject: Re: Teenagers and Careers - reply to a reply to a reply€



Ah - Phil - you idealist - Idealism is good - however it must be tempered
with realism and some experience. Keep your idealism - but learn from this
experience.
The real world works like this.
If the employer knows up front you have a disablity - he won't hire you -
even in violation of federal law - why? - because it will cost the employer
more to accomodate your disabilities than you will make him. Accommodating
disabilities is an economically unsound policy. Try to prove
discrimination - the law's weighted toward employers - and it'd cost more
than you can afford to pay a lawyer in order to get a minimum wage job.
If you volunteer no info - and don't get the job - he either never noticed
your N or there's someone he likes better - or he noticed your N and
thought it was weird (but couldn't ask because of the forementioned law) -
or whatever. If he knows you have a disability I can guarantee you won't
get the job - but you can't prove it's because you have N - unless you have
a really good lawyer specializing in Equal employment opportunity
commission stuff - EEOC.
Keep your lip zipped- volunteer nothing - dress nice - take the tongue stud
out 8-}) - act like you really want the job. See what happens. Be
Positive- smile a lot - keep your hands folded in your lap - don't play
with stuff on the interview table - etc. If your high school has a program
where you can practice an interview - use it.
Sorry to sound so patronizing - but I've been there and done that so many
times I can't count them all - and dont' want to.
There actually was one time I was hired BECAUSE of my N. It was at
Goodwill Industries of NM - and they wanted to show that one of their
supervisors had a disability. It turned out to be me. I was a jerk and
quit. Shouldn'ta oughta gone and went and done that - stupid on my part.
Had paid vacations - the only place I ever worked where that was true. Til
now. STill kicking my self over that one 20 years later. 20/20 hindsight.
Phil - what ever you do - stay in school until you at least have a
Bachelor's from some univ. OK?
Don't be mad at a venerable flatus for wanting you to succeed in your quest
for gainful employment.
CYa
Sam

steve
i kinda have transportation under control since i can ride my bike or
it's close eough to walk so i think i have that under control
thanks
philip

Hey sam
I just wanted to let you know that i got the job even though the
employer knew about my N. I didn't tell her how it affected me much but
i still let her know i had it. On the app. i filled out it asked if
there was somthing that might affect my work so much that i coudn't do
certain tasks (or something simmilar to that) i went ahead and put my N
and she just asked a questionn about it and went on infact she hired me
i start sunday.
philip

Congrats to Phil!!!
Nann

ngreen@CMC2.cmc.edu


When you interview for a job you probably should follow your instincts
about what and when and how much to tell. But when you face an
application form with a specific question, you had better tell the truth;
lying on an application (or resume), can be and sometimes is used as
grounds for dismissal.

- Sue G R
suegoetzross@Juno.com

Hey Phil
It is so great to be proven wrong!!! Egg on MY face! Tooo Glad!!
CONGA RATS!!! (Congrats!) - Good Show!! - Your boss must be a motherly
type. Excellent News!!
No Matter - GO GET 'EM TIGER!!!
Keep a positive attitude - don't listen to negative people - do whatever
they ask - Keep on smiling - makes 'em wonder what you're up to. 8-})
Cool
Cya
SAm

Sue
How 'bout when that app violates federal law by asking indirectly about
disabilities - which may influence the employers decision to hire?
Employers have no need to know this.
Just wondering. WEigh in Vicky!
CYa
Sam

Hi! thought it might be helpful to point out here that
such questions should be and usually are found only on an
Equal Employment Opportunity Commission questionaire. Em-
ployers are NOT supposed to see them in relation to a
specific applicant's application. Such surveys are supposed
to serve as gatherers of raw data on how many applicants are
male/female, have a disability or a number of other factors.
Jeff

ollie17@ix.netcom.com

The employer does have the right to know of anything that may limit
your ability to perform certain tasks. For instance, if your N keeps
you from getting a driver's license, you can't deliver pizza. At my
first job, because of my eyesight, I was specifically prohibited from
driving a forklift (a notation in my file).

However, I will also say that I have never actively pointed out my N
during a job interview. I will point out my limitations in performing
tasks but it is none of the emploer's business _why_ I have limitations.

...ken

rowberryk@yahoo.com

hey sam
thanks for all the great advice though and i will probably use a lot it
in the future...um i don't know that much about my boss yet but she
seems pretty nice and that she will try to help me as much as she can
infact she already said i can have as muuch time off as i need for
vacation with my family since we make frequent visits to where we used
to live so it shouldn't be to bad
tanks a lot
philip

steve
i'm not sure how much guts had to do with it i think it was the
motivation my parents kept giving me to get out of the house and get a
job, or do some stupid odd job around the house once a week... either
way i have job
thanks a ton
philip

Hey Phil
I'm just an old wet blanket.
Congrats again
Keep up the good work.
Cya
SAm

Oh brother! I can't let this one go.... I don't have any kids, but I know
that if my mom had ever learned that a teacher had said something like this
to me, there would have been immediate ramifications for the teacher!

This is a tough subject to deal with because there are multiple sets of
limitations that come into play. 1) Limitations that we set on ourselves (I
could never do whatever because I don't think I can....), 2) limitations
that are set by regulations (you can't drive unless you can read a license
plate at 25 yards, no matter how well you see), and 3) limitations that are
realistic based on the person's own experience (I played softball for
several years and tried my best - therefore, I probably won't ever be great
at softball).

I guess my point here is that item 3 is one we learn from experience. Item 2
is something we have no control over in the short term (other than work to
change the rule). But item 1 is the real killer. That's where most people
fail to set or reach goals. Teachers and parents are supposed to help kids
get past the self-doubt and lack of self-esteem in order to help people
determine what they *can* do and not what they cannot do. I know this is
sometimes difficult if you think your student or child is setting a goal
that seems unreachable. But what they may fail to realize is the importance
to the person of striving to reach that goal; of learning from the
experience.

Now the world is not as black and white as I've just painted it. Parents and
teachers can work with kids to understand what is behind the goal, just as
Steve explained. By educating the kid about the hardships he is likely to
encounter may be helpful in helping the kid to set more realistic goals. But
to flat out tell someone that they aren't going to be able to do something
just because a teacher thinks the road might be a difficult one is crushing
and pointless.

Thank goodness no one told Jennifer Hunt! It sounds like she's doing pretty
well right now, and she's helping a lot of us while she's at it!

OK, I'm climbing down off my soap box now.

-Karen

-----Original Message-----
From: owner-nystagmus-list@fas.harvard.edu
[mailto:owner-nystagmus-list@fas.harvard.edu] On Behalf Of Abe3849@aol.com
Sent: Thursday, September 10, 1998 5:59 PM
To: nystagmus-list@fas.harvard.edu
Subject: Re: Teenagers and Careers

When I was in seventh grade a teacher asked me what my career goal was. I
told
her that I wanted to be a doctor. She reacted by telling me that because of
my
vision I could never make it through medical school. Since then I have heard
of blind people who have become doctors. The result of her comment was that
I
began to lose interest in school since I had lost my big goal. Maybe I would
not have made it to med school, but I might have gone into pharmacy or some
related field.

Sometimes one seemingly insignificant comment can change a life.

Steve

hey sam
as it turns out she probably is the motherly typre since she is going to
let a kid work there that was having trouble filling out some of these
applications durring orrientation (he has a reading problem and not an
eye problem) so she seems like she'll be really nice
in fact she ghoing to have me do registers but she said if i have a
real tough ti,e working them she'll try to move me to a position that i
can handle better
outta here
philip

Hey Phil
Just from what you describe - you got lucky and got a boss who's worth
being loyal to. Believe me - there's a ton of supervisors who'd stab your
back in an instant - not worth your loyalty. Sound's like this one is the
exception. Loyalty to one's employer is a passe concept - but worth trying.
CYa
Sam

I'd just like to say congratulations to Philip also, and to say that both
Sam and Sue GR make pretty valid points about employment practices. Some
employers would never hire a person with a disability unless they had to.
Other employers will hire a person with a disability before one without, as
long as all other qualifications are equal. Just depends on the employer,
although, I'd bet the disability-hiring inclined tend to be the larger
institutional employers or employers in the disability/special needs fields/
or government employers, while smaller private employers may be less
inclined. And Sam is definitely right about the cost involved in taking an
employer to task for discrimination, although under the ADA, attorneys fees
are covered by a losing employer in the end. But at the outset, you may have
to bankroll at least the costs.
-Vicky

Sam,
You are right about applications being suspect when they ask about "special
conditions", but I think most employers who include such questions are the
employers who will bend over backwards to hire a "disabled" person, so long
as the accomodations needed are reasonable. That's really what the question
is aimed at. Not weeding out someone with a disability, but weeding out
someone who needs so much accomodation it would be unreasonable to place
them in a particular position, or in order to have grounds for terminating
an employee who has understated his needs. Sue is right about falsifying
information. If you don't disclose a disability, or a special accomodation
needed, then you can be terminated for that. while the question may seem
inappropriate, I think that it is valid so long as it is stated in such a
way that it is clear that it is related to job qualifications, not sort of a
disability for disability sake question with no relevance. Federal law does
not prohibit an employer from excluding persons with disabilities from
certain kinds of work which would create safety hazards, or if there is some
other overwhelming need for the employer to restrict certain poisitions.
Bear in mind also, Sam et. al., that employment law varies from state to
state, although all states are subject to federal employment laws like Title
VII and the ADA.
-Vicky

Phillip,

I wasn't in on the early part of this discussion, but I want to give you an
"atta boy" for being up front about your vision in your interview. I can
understand Sam's point about some employers opting not to hire someone with
a disability, but I think covering it up can put you in a really tenuous
position. In my book it's better to lose a job because a potentional
employer is ignorant than to go through the stress of a deception through
your entire association with a company. Besides, if it's a question on the
application and you lie it can be grounds for firing you.

Anyway, good job and congratulations.

Chris Maltby

Dear Vicky:

I heartily agree that a discussion of teenagers and careers deserves special
attention, perhaps on a website. The many responses on this topic over the
past week tell of the difficulties young people face in finding and holding a
job because of nystagmus. However, there was little concern with career
preparation and planning. I can understand that. I vividly remember the times
I couldn't get jobs I wanted or lost good jobs because of my eyes. I've been
there and I know the trauma of that disappointment. I'm sure that almost
everyone on this list knows that hurt. And it is precisely because I believe
we can do a lot to help teenagers avoid such misery that I bring this topic to
the group.

I envision a job and career advisory service that can identify the best and
worst fields of employment for us, specify the education and training
requirements for particular fields, offer advice on the limitations of
nystagmus for various jobs, and inform us of the experience of others coping
with these limitations. In short, I envision a job and career advisory service
oriented to nystagmus.

However, I know that's unrealistic now. There just doesn't seem to be enough
interest in career preparation. But as the nystagmus list grows and evolves,
and forms an organization with stated goals, I am confident that career
planning and preparation will be among them.

Sincerely,

Jerry

JERRY63@aol.com

Jerry makes excellent points once again.

I recently wrote directly to Sam that I have to say the same things to
people who are testifying under oath that Sam says to his students: don't
nod your head or say uh-huh, please say yes or no so the court reporter can
accurately transcribe your words.

I'm a lawyer and I would say that being a lawyer or a court reporter might
be good careers for persons with N.

From this list I can tell there are a lot of articulate people with N, and
we even have at least one lawyer with N around here somewhere (Richard?) and
maybe more lurking. I know several lawyers who are blind or legally blind,
so visual problems can be overcome. Listening is one of the most important
skills in lawyering. That's because it is historically a field which relies
most heavily on the printed and audible word, not visual displays, although
visual effects are becoming more popular and, due to our video culture,
becoming more a matter of necessity. But traditionally, it was the oration
of lawyers and writings of lawyers which were their mainstays. To this day,
having an ear for how all the live action will look on paper is invaluable
in trial work because on appeal, it's all in writing. What was once a neat
trick in an open courtroom may lose all effect when transcribed in print, or
not be transcribed at all.

Court reporters of course have to listen very closely and the other part of
their job is to get it down on paper correctly. I don't see why someone with
N couldn't do that. The lines are all double spaced and usually begin with a
"Q" or an "A", so it's not as hard to lose your place.

Law school requires a four-year college degree and three years of graduate
school, followed by a bar exam of several days' duration. Good undergraduate
grades and/or good SAT scores are required for admission to law school. Good
references from college professors and others are also a plus. Many people
try to get jobs as pages in state legislatures or as teaching assistants to
help political connections, and it's not a bad idea if your grades or SAT
scores aren't to-notch. I got in with a 2.5 undergraduate GPA, 90th
percentile or so overall on the SAT, a letter from one college professor,
and not knowing a sole in the state where I applied. In addition to the bar
exam, lawyers have to pass a character screening and in our state, an FBI
check. It is not an easy road for the fully sighted, but with good
listening, reading, writing, analysis, and grace under pressure skills, it's
a cinch. Do be prepared to wear a suit or a dress every day for the rest of
your working life, however! You could help others like yourself by
concentrating on ADA cases or the like. I would think most private firms
with that kind of practice would be interested in an attorney with a
disability. Good grades in law school are very important to finding a job.
It is also a good idea to try to work for a law firm as a clerk while you're
in law school, at least after first year. Getting on the ball early is
critical, because if law school is anything it's competitive, and the early
bird gets the worm, with a few typical exceptions.

Court reporters don't have any four-year college degree requirements,
although some sort of professional training is certainly required prior to
testing and certification. A call to any state bar association should get
you an answer or referral to a number where your question can be answered.
Otherwise, look in the yellow pages and call a court reporter and ask them.
Some court reporter jobs are private and may require transportation,
although the lawyer would probably be happy to give you a lift if you ask.
Other court reporter jobs are state or county or city court jobs and would
be more stationary. I would think that good grammer, punctuation and
spelling skills would be a must, and the only time I find mistakes in
transcripts are when the reporter lacks in those areas.

Another nice thing about both jobs is that they are fairly scheduled
occupations, and you can plan ahead for your transportation needs, which may
not be daily.

Hope this helps anyone considering these careers. Also hope more of you will
write in with specifics on how to and why to.

-Vicky

Vicky,

Hi! How are you doing?
This is certaionly a GOOD
post you have written. I
wish I had it ( and this
List-serve )available when
I was deciding on a career!
However, you know that story
already.

Thanks!,
Jeff

Hello ,

I have been driving a car in India, but I recently moved to the US. And its been impossible passing the road test. Does anyone have any tips on how to pass the road test. I can drive well but during the test I am so nervous that my N seems to increase? My vision is 20/70

I'm new to this discussion board but feel
compelled to jump in here.

The whole idea of counseling teens (or anyone)
with Nystagmus into an "appropriate" career is
very troubling.

I'm 31 now and acquired a pretty severe case of
Nystagmus and Strabismus (and a laundry list of
other problems) when I was 24. It took me some
years to learn this, but I really believe you are
only as limited as you let yourself be.

Needless to say, at 24 my life was turned inside
out. A promissing young career in the film
business was up ended and put in a holding
pattern. I was out of work for the first few
years but I made good use of that time. I spent
those years learning computers and began doing
graphic design and web site design at home.
Suddenly a low vision Nystagmus sufferer was
earning a living as a working artist.

Two years passed and I felt it was time to go back
to work full-time. Plus I decided I wanted to get
back into the film business. Within months I was
offered a position as web designer at a world
famous visual effects company. They looked at my
portfolio and liked what they saw. I never
bothered to tell them anything about my health.
As far as I was concerned, it was really none of
their business.

I spent two years as their web designer, spending
free evenings and weekends learning what I could
about visual effects. I trained, and I traied,
and I trained and a year ago I was offered a
position as a visual effects artist. Imagine, a
person with Nystagmus and Strabismus creating
visual effects for the best effects company in the
world. Anything is possible.

What's my point? My point is that I didn't bother
to ask anyone if they thought I could do it. I
knew I could. And I did.

Nystagmus is about vision. Unfortunately having
it often effects not only how we see, but how we
see ourselves. If your Nystagmus is acquired (as
mine was), you are just as smart as you were
before you had it. Just a creative. Just as
funny. Just as capable of doing outstanding work
as you were before.

Anything is possible. Trust me.

Josh

Oh yeah, I take the bus to work

hi josh

good letter.
i believe my N is not as strong as yours, but i do believe (and live) in what u said !
it is important to emphasis that point and to make other people stronger !

or

n.b. many thanks to this site's builders

Dear Driver in India,

If you feel safe and confident driving,
bring someone to the DMV with you and have them
read you the line you need to read to pass the
test, then memorize it. If you don't want to be
that sneaky, ask your eye doctor to write you a note. Good luck.

I can't advocate cheating even though I live in a state whose Governor (a former pro wrestler) became a Navy Seal (special forces) by cheating on a test for color blindness. If you cheat and are caught in some manner be prepared to accept the consequences. I have been in three accidents in 25 years and one was my fault but none was related to sight (stupidity but not sight). You maybe confident but don't become cocky you must always know your limits and not push fate.

George

I can certainly relate to the many posts from individuals who are not able to obtain a license because of their low vision. This is especially difficult in a society where this privilege is taken for granted and where, if you are not able to participate, you are almost viewed as being defective. Add this to the other problems we endure because of our low vision and it can be overwhelming at times. There is an option for some that is not very well known. It is the use of the bioptic telescopic lens that when mounted in a pair of eyeglasses may legally qualify you to obtain a driver’s license in your state. See this site for a listing of vision laws by state. http://www.lowvisioncare.com/visionlaws.htm I am not advocating this for everyone who qualifies, but in certain cases, if one uses good judgment and knows their limitations, it can mean new freedom and independence. If you think you meet the vision requirements, see a low vision specialist who is familiar with fitting bioptics for driving. Feel free to email me with any questions about low vision driving. I have received my license after 20 years of beleiving it not to be possible, and know of many who have been driving with the use of a bioptic for years.

I am new to this BB but here goes: I am 44 yr old male with CN and compensatory head movent. I always new that something was wrong with my eyes and endured the teasing and snide remarks but the full impact didn't hit me until I failed the drivers vision test at 16. I was devastated but my father encouraged me to keep trying and finally after almost 1 yr I passed the test using an old-fashioned wall eye chart. I have been involved in several accidents but have never been at fault so I think I'm a much more cautious driver because I have to be. I was very shy and didn't date until I was out of high school becasue the CN lowered my self-esteem, but gradually I have become more self assured. In 1992 I underwent corrective surgery which lessened but did not eliminate the CN. I have a wonderful wife and two daughters (both CN free, thank God)and I play ice hockey, play in a blues band, and have a career as a museum exhibit designer. I try to be positive and realize that my problem could be much worse, but I understand how people with N can become depressed, withdrawn, and angry. (BTW, CN kept me from being drafted) Conclusion: N is a misunderstood disease that affects me every day of my life and every aspect of my life. Aside from the visual impairment the damage to confidence and self-esteem is not measurable.

I live in Monterrey Mexico and my husband has CN where I can say about this matter is that even he can not drive and never will. I really love to take him everyplace we need. Sometimes is getting hard, even that I know that I will be the only one who will pick up the children at school and drive for vacations and for market and to buy a medicine, even after my child born I had to drive just after the born. That was the hard part. But the nicest part comes when you try to make a really functional team. I think we make it. The CN people does not have to be alone.... You just have to find someone who would like to make a team with you and the rest of the life could be normal. The other thing here is the taxis fees are so cheap...There must be alternatives....I hope you can find the support you need

Hello,

My name is andrew and i am 23 yrs old. I have had nystagmus since birth...and it has been hard growing up with N. But about 3 yrs ago i realized something..have your ever looked at Pierce Brosnon or other peopel how they have like really small eyes ...and you can't see their pupils too much. Well my N was really noctiable before but i started kinda slowly squinting my eyes and now i have just kinda gotten used to it. I mean i don't squint to the point it looks ridiculous..but just enough. I've been doing this for so long that my eyes have pretty much stayed this way..at least now my nystagmus isn't as noticable. This may sound really crazy...but makes me feel better.. but it takes some time getting used to your new look!! Fell free to email me about other advice...i've been living with it for 23 yrs now... i only hope that someday there will be a cure..or it will magically go awya....bye

My son Ross has nystagmus and although he must sit up front at school and has to hold his face extremely close to his book or paper he has adjusted well. He even plays football at his highschool and is 1st string. Recently though, he has been thinking as all teenagers do, of driving. We took him to the eye Doctor yesterday and were told that he is on the "bubble". In other words, he has to see 4 letters on the eye chart to pass for driving and of the 4 he could only read 2. We ordered him another lense for his left eye because the one he had was scratched but I am not sure that is the problem. I want to find a way to help him see better. He has astigmatism as well and when they put him in contacts this helped that tremendously. We thought, wow, what an improvement, but now he is going thru puberty and his eye sight has declined again. Would surgery for astigmatism help get him over the bubbble? Is there any procedure or surgery in the works for nystatmus? He has an older brother who is driving and when he failed the eye test he was devestated. Please, some information?

Thanks!

Lisa

Hi Lisa...

I can only speak as a lay person and not a medical professional, so my response should not be considered as any type of medical advice. Here's what I know from what I've heard from others with nystagmus and from what I've absorbed.

First, assuming your son has true congenital nystagmus and assuming that all the refractive errors (like astigmatism) have been corrected, it is not unusual for teens to experience an apparent decline in vision during the teen years due to the nystagmus. It is known that N is worse when the person is tired, sick, or under stress and the theory is that teens are generally living pretty stressful lives. After they become adults they still lead stressful lives but they have learned to cope with it, so their actual stress level may be less. Again, this is speculation, but some stats do show that N appears to get slowly better over time with the exception of the teen years where it is somewhat worse.

The trick with most types of N is that it can be a self-fulfilling prophecy as to how stressful it is to take an eye test. I know that I see worse when I am trying so hard to read the chart. The harder I try the more stressed I get and it's a vicious cycle. It is important that your son be able to take his time and have all the time he wants and needs to read the chart. If he feels rushed he may not be able to do his best.

Regarding driving and acuity... It varies from state to state as to what the driving laws are, but it sounds like your son is borderline. If his astigmatism is not severe, he might try soft contacts or maybe gas permeables. It is difficult to fit an N patient with the correct contacts and ti will take a patient optometrist who is willing to work with your son in order to get the right fit. There have been a number of people that have reported an improved ability to read an extra line or two on the eye chart after being fitted with contacts. For some reason the contacts themselves can act to reduce the N.

If contacts are not viable, explore some other possibilities such as a restricted license with daytime driving only. Or perhaps visit a low vision specialist in your area and have your son evaluated specifically for driving. Low vision specialists spend their livelihoods helping people with all kinds of vision needs to adapt. They have a lot of potential visual aids that range from modifications to glasses all the way to special bioptic lenses (telescopes on eyeglasses) that can aid in driving. Again, it depends on the state you are living in as to whether these aids are legally permissable.

There are some potential surgeries that your son may qualify for but there is no cure for the N. The surgeries I know of can reduce the N and possibly improve vision. The most common one is called Kestenbaum or Anderson-Kestenbaum and its primary purpose is to center the null point if your son has one and if he in fact has true CN. There is another experimental surgery called Tenotomy which has some promise but it has only recently been performed on adult humans and the test results are not in yet on the effectiveness. This is an area that still requires much more research as N is not something that is well understood.

Finally, a statement about driving in general. There are many peoplw with N who drive and many who do not. The informal surveys I've seen and participated in indicate roughly 50% of N people can drive. Many do not get licenses until they are older and some use bioptic lenses in order to facilitate driving. Most are restricted in some way, such as daytime driving or speeds less than 45, etc. Driving is a status symbol in the US and it is devastating for teens to think that they cannot drive. But, life without driving is not the end of the world and most people with N who cannot drive conquer this hurdle in the same way they learn to read and deal with thos not quite legible signs. It is hard, but it is definitely not the worst obstacle to overcome. Patience from the whole family is probably in order during this period, regardless of the outcome. It's just a very tough time anyway you slice it and your son will get through it - with or without his license.

I have just discovered you site. What a great idea. I live in Sydney Australia. I have three children - two with Nystagmus. A boy 16 and one fraternal twin girl 14. I had never heard of N before our son was born and what a shock when one of the twins had it too!! Does anyone know what the likelihood is that they will pass this on to their children??

I am always fighting for them as far as getting them help. Not only from teachers etc but also my children are very reluctant to tell people that they are vision impaired. This just makes it worst. He has only just agreed to have exam paper enlarged even though he has done poorly at exams before and I believe this is due to the stress and the effect it has on his vision.

Our son has a part time job and I was the worlds worst mother for telling the Manager that his was vision impaired. He did have trouble using the cash register as the colours were hard for him but he worked it out. He has just obtained his drivers license. He has to wear glasses when driving but just the fact he could drive was worth doing anything for. He actually failed the eye sight test at the Motor Registry (but as has been mentioned I believe stress plays a big part)he was rushed. He passed because his own opthomogist had written a letter that the Motor Registry accepted. Our daughter will not be able to drive - unless computerised cars come soon!! She has accepted this. I'm interested to see that contact lenses might help.

As for work opportunities well just it is a worry. We would like him to go and do something with computers but he likes mechanical things. He absolutely hates reading and that doesn't help either.

I would just like someone to put a pair of glasses on me that would let me see the way they do so I could appreciate more what life is like for them.

Its great to read some stories from other people about Nystagmus. Thanks

Hello, I am a new member to this site. My name is Jan, and I have congenital CN. I am 40. have a husband and three kids, (no N) a great job, and I drive.

Teenage years were difficult for me in the 70's; I have no doubt it is harder now. Add N to the mix, and life could be very frustrating and disappointing to a teen, without a strong support team.

When I was in high school, I had a job at a restaurant waiting tables. In those days, we would hand-write our orders; I didn't have to worry about food keys on a computer. Later, I did work at a restaurant where we used a computerized system, so I memorized where all the keys were on the board!! I could put in orders faster than my full-sighted coworkers! The only problem came when the owners would change up what items we served; then they would change the keys and codes, and I had to start over!!

I never told any interviewer about my sight limitations, but now I am not so sure that is the best way to go. It borders a litlle on dishonesty, because if you get the job and fail, you have to either explain, thus adding to the humiliation, or leave the job with the others there thinking you were a loser. (With weird eyes) On the other hand, if you level with them up front, then if they didn't hire you, it wasn't becuase of anything you did or didn't do. They stand to be the loser; a person with N is probably going to make ten times the effort of another, because they REALLY want a job!! And of course there are good employers out there, who are willing to give us and others with limitations a chance. I always went at it with the idea that to admit to my limited vision would automatically eliminate me from the running, so I tried to slide through my interviews without letting my N show much; then hopefully by the
time they realized I had funny eyes, I would have already proved myself, and they would keep me. Although this did work for me, it produces a lot of stress; something we don't need more of!!

My family wanted me to go into nursing. My N, and the social grief it caused me created a person who had a lot of compassion for others. I was interested in nursing, and knew I would be good at it, but I couldn't handle the idea that just one visual mistake might jepordize a patient's life. (Not to mention lawsuits) What I REALLY dreamed of was teaching English and Journalism at the high school level. But by the time I graduated from high school. I had grown weary of the struggle to see the board, and feared it would be even worse at a a university. More than that, I was insecure, my self-worth was zilch, and although I know I was smart and could probably do anything I put my mind to, I simply did not possess the personal strength to do it.

This is where a STRONG support base comes in. Although my family loved me, their verbal rewards tended to come for things such as my ability to cook and clean house at an early age, or my great babysiting ability. I was told that I was a "good girl", (something that can sometimes be hard to live up to) but no one EVER told me they liked just because I was ME. I wasn't a cute or pretty child, and no one ever said otherwise, thus reaffirming what the mirror told me. No one really gave much encouragement to my musical ability; it was a given in our family, but I wanted to be complimented for it. Although I started off very well in school, I eventually ran into teachers who were turned off by my strange eyes, and combined with the struggle to see but still appear normal, my interest in school fell, and my grades, which could have been quite good, became average at best.

My point in all this personal history is this: A person with N needs to find a balance between daring to acheive and knowing what they will be limited to, realistically. This is especially difficult in the trying teen years. While it can be said that my family never told me I couldn't do something, they also didn't particularly encourage or help me acheive goals. It can't be said enough: love unconditionally, and be your N person's best friend and personal cheerleader, from day one. What they eventually do as an adult doesn't matter so much, as long as it's honest, and they give it their very best.

My best to all of you, particualrly you teens out there. Never quit and keep the faith.

Jan

Hello,

i'm french and i leave in Paris.
i'm nearly 23 years old and i work for about two months in an computing company.
My N. isn't so important, i have 6/10 to the tests , with my glasses.
I have failed in my superior studies because i'm really slow when i have to watch the blackboard.
I write fast but see slowlier than the other, the frustration is important...
When i have an interview, i don't say i have a nystagmus. I begin to think that it is an error to not say it, because i've got a "good presentation" and, when i meet the interviewer, i'm not so bad. BUT, the problems comes after. I work on computers all the days and when someone shows me something, it's difficult to follow...

I have constated that emotions "plays" on my eyes.
and you ?

I have bad eyes but i hope to have good ears. Since i'm young, i like music and i play the flute. It's probably a good way to think something else. (i reassure you, i'm not a genius) I like to play films music i've eard at cinema or radio's music.

work isn't my goal in life
i like to laugh and meet friends !

Just two last questions about work:
--> does some of you work as "actor" (Exemple: for thatre ) ?

Thank you for this web-site, a really good idea
--> A quand un site consacré au Nystagmus en France ?

ŕ bientôt

Harry

Hello, My name is Krista and I am 22. I am unable to drive, but have done pretty well with riding bike. I live in a somewhat small town with a very inadequate bus system.

Harry, It is nice to know that I am not the only one who's emotions mess with their eyes. When I am nervous, upset or very stressed out my vision goes downhill.

I am currently looking into getting a device called a telescope that hooks onto the top of a pair of glasses and allows me to view things enlarged. The particular ones I am looking at allow most of the buttom portion of my glasses to remain uncovered so that I can stil look down at a notebook or book if I need to. I hope this will improve how I can see things that are further away. I do know for sure that I can't hurt.

Hello everyone!
Wow there is certainly a lot of response to this topic and I think it would be a great idea if it had its permanent place on the discussion board. I too shared a lot of uncertainty about what I would do as a career. As a child, I had a lot of unrealisitc fantasies about what I would be. Later, I realized that many were unobtainable (such as being an astronaut, first becasue of poor vision, later because I realized I was afraid to fly!). I grew up in Eastern New Mexico on a Ranch. I loved living in the country, although it was very socially isolating. I tried to help my family on the ranch, but to my disappointment, I failed at most of it. I lacked the good vision needed to see things from a distance, the upper body strength, and the hand-eye coordination. I made good grades in school, so I decided early on that I would attend college. In our area, no one really was prepared or received career education. However, I had so many failures (such as using a computer) and lacked knowledge of adaptive technology that might help, I could not figure out what I was going to do beyond being a professional student and bookworm. To make a long story short, I finally got a degree in social work and currently am a Vocational Rehabilitation Teacher for Texas Commission for the blind. I try to help others with low vision deal with their situation through some of my personal experiences. However, I end up learning a lot from them also. My advise to those teens struggling with these issues is to try everything you can. Talk to others who have had simular experiences and find out what careers they chose. Also, find resources that can help in your state. If you have a state agency for people who are blind/visually impaired, contact them. They can be a great resource for career information and how to find help with technical problems that may arise, as well as adaptive devices for people with low vision. I know one thing, if I had known what adaptive aides and software were available, I might not have seen my career choices as being so limited. I might have persued my interests in science instead. I hope this helps!
Becky

hi its me again. I have a few question about the vison thing. I also have CN a minor one from what my docotr said, but it still affect me. Like dept perception and distance and about havign to slow down just to read a street sign and not seeign exactly where or what people is pointing too.

okay the questions.

1) what do they mean partialy blind? like to what degree is it? I know for me when its dark I can't see almost nothing. I have to have someone hold me so I won't stumble or walk into things like in the theater when the lights goes out, i sometiem step on peopel or bump and bruised my self with the seets.

2) the numbers on my glasses and contact perscriptions. I hear alot about vision correction and there was number like 20/40 and 20/300. I don't get it. I'm near sighted for sure and on my perscription its a -3.00 on both eyes. Do anybody know what that mean? is it like a 20/30? and by correction its by what I can see after the glasses or contacts right? WEll even with it on I still can't fixate just improve my vision and i know its not 20/20 cause I still can't see most thign people can see in classes with out their glasses. And they're sight are worst than mine.

well thats all I have to asked cause I am lost.

Hello,
My name is Janice, I am 35, have been born with CN
and Stabismus. This is the first time I ever
attempted researching however. Here's my story:

I was put in special ed from 3rd to 9th grade.
Basically it was regular public with a tutoring
program for the "visually limited". This was the
equivelaent of sending me to school with a kick me
sign on my back. I also quickly picked up on the
pitty thing from the teachers and learned no
matter how little work I did I would be passed
anyway.

Along with my N, another inherited family trait
was the ability to draw. This became greatly
encouraged by my family. I was never told I
couldn't do anything, actually my low vision was
practally never metioned. I think the real plan
was if they ignored it enough, it would go away.
At 14 I decided to apply to a special art high
school, so I got my grades up fom C to A in year (
my parnts were shocked!). The art became my way of
prooving (or pretending) there was nothing wrong
with me. I did well in high school, I learned to
write in my own short hand of everything the
teachers said, to compensate for not being able to
see the blackboard.

In collage I majored in illustration and was
always at the top of the class. But it was at this
time the realities of having to compete in the
real world became very scary.

I've managed to keep every studio job I've gotten,
thought I think my struggle was very obvious, I
was able to over-compensate enough in other
ways--being likable and responisble etc. Most
people don't ask about the N, though I know they
want to. And I've not figured out an eloquent way
of bringing it up.

Soon after I graduated collage, the graphics
industry was revolutionized by desktop publishing.
The computer saved my career, graphics software
allows you to zoom up to 1,000% if necessary.
Today I am an independent freelancer working out
of my home. My clients think there's just alittle
something wrong with my eyes, they have not idea
as to the extent of it. I won't drive, but in NYC
its easier not to! I still draw and paint for
myself, but it's frustrating knowing that I could
have possibly been m

I have read may messages about 20/40. This may be true for some states...ones I sure cannot live in. Some of you need to check your state's standards a little better. In the great state of Texas you can drive with upto 20/70 in at least one eye. There are some restrictions--Day and 45mph...but it is better then nothing.

"Applicants applying for a Texas driver's license must meet the vision
standards set by the department of public safety.

The standards for two-eyed vision are as follows:

a) without corrective lenses, 20/40 or better each eye and both together: no
visual restriction;

b)without corrective lenses, worse than 20/40 with either eye or both
together: refer to specialist;

c)with corrective lenses, 20/50 or better with best eye or both together;
any score with other eye: restrict to corrective lenses;

d)without corrective lenses, case (c) score with specialist's statement that
vision cannot be improved: no visual restriction;

e)with corrective lenses, 20/60 or 20/70 with best eye or both together; any
score with other eye: restrict to corrective lenses, daytime only, 45 miles
per hour speed limit, any other advisable restriction;

f)without corrective lenses, case (e) score with specialist's statement that
vision cannot be improved: no visual restriction, daytime only, 45 miles per
hour speed limit, any other advisable restriction;

g)with or without corrective lenses, worse than 20/70 with best eye or both
together; no further improvement possible: fail.

The standards for one-eyed vision are as follows:

a)without corrective lenses, 20/25 or better in best eye: no visual
restriction;

b)without corrective lenses, worse than 20/25 in best eye: refer to
specialist;

c)on all other case scores: use two-eyed vision standards;

d)for driver licensing purposes, an acuity score of worse than 20/200, with
corrective lenses or specialist's statement that improvement of 20/200 or
better is not possible: is considered blind.

Color blindness is checked on all original applicants.

B. Sassman

License Issuance Bureau"

I am a college student right now. Yeah I have N. Sounds very cool to just say N. But anyways, I have read a few of the messages and I must say I do agree with alot of the stuff said so far, there are alot of things we simply CANNOT do.

As far as different career choices and the limitations posed by N, I must say, I have had a few experiences when I found that my eyesight would limit me in the kind of career I chose. Starting off with being and astronaut at a young age. This however will not be a messsage posted with a sob story on every time I realized I was too nearsighted to do a job. What it is intended to be is a comment on how very possibly it is to pursue the things you like. Yeah, I'll never be an astronaut. But I can pursue a career in physics or Business. I can do ugly physics type calculations, albeit three inches from my face. I can lean accounting, even if it means sitting front-row center and asking for the notes after class to mak sure what I wrote down was correct. I used to be in the school band in college. They often had to enlarge the music, but eventually I learned it. Even computers are possible. Geez, my job right now as a computer consultant consists of me sitting in front of a computer screen for hours at a time and helping folks over the phone. It is all possible. Or most of it at least.
The bottum line is, If you want it, just go and get it.

However, I do have a question......
When I sit in front of the computer screen at work for more than an hour or two I find that since i view stuff at an angle for a while My right eye gets stuck in a particular position
and it looks like I am cross-eyed and I cannot see very well for about two hours afterwards. I have trouble with depth perception and riding my bike in a straight line when my right eye is in this position. I dunno, just wanted to see if anyone experienced this.

PS
Thank you to the state of Texas for giving me a Driver's License, even if I can't drive at night or over 45 mph.

i have a mild case of nystagmus and i am a painter. i like collage work as well. cutting and glueing. i just look strange when i paint. you know.. "null" point all close to the canvas , head cocked trying to get that line the way i want it. i'm pretty good. even getting my masters in art now.

I'm new to this discussion board but also want to chime in about jobs and having CN.

I was a great student throughout school including having a 4.0 GPA in college. I didn't graduate, though. I finally got to a point where the stress of trying to read things on the blackboard, the text, the badly-copied worksheets, and not being able to recognize people's faces was too much for me. I even went to a doctor who is supposed to be a big expert on prescribing glasses for people with nystagmus. The glasses helped a little bit but made my ability to see people even worse and then that specialist moved away. Now I am trying to get an appointment with another specialist! My vision is not too bad, I can drive, but it does affect some of the things I can and can't do.

I have spent the past 10 years working a variety of awful minimum wage jobs, mostly in fast food. I was mainly relegated to the drive thru window because I have a sweet, lilting voice (which I read is a sign of nystagmus)and it sounds nice over those bad drive-thru speakers. My voice is so syrupy sweet sounding that I once tried telemarketing and was asked by a person I called, "Are you old enough to be doing this?". It's a small problem to have, I know, but at almost 30 years old I am always treated like a teenager by new people because of my voice and I am only 5 foot 4 too.

Finally I decided to pursue the career that I've always wanted: breeding and selling purebred Arabian horses. I do all the farm work and most of the interaction I have with clients and potential clients is online. I have a website and I get inquiries via e-mail all the time. I don't talk to people on the phone much because I want to be taken seriously as a horsewoman. I don't want these folks, who are usually quite wealthy, to think they are dealing with a kid.

It is a little bit different thing to do for a career but a horse is a big animal, easily visible, and they don't judge me because of my eyes. And they love the sound of my voice!

Someone posted earlier in this discussion about body language, especially the way the eyes move. I had problems with this throughout middle and high school. These girls who rode my bus always thought any time I looked at them, I was rolling my eyes at them, and would threaten to beat me up. Eventually I just rode the bus with my head down, reading a book or looking out the window. Also in high school this one boy used to pick on me all the time, saying I was on drugs because my eyes moved "all weird." I finally transferred to another high school in the same city because of all the problems I had at the first high school. That boy told everyone else in the classes I was in that I was a druggie so no one would talk to me (except, of course, the kids who WERE on drugs and I didn't want to associate with them).

I'm glad I'm an adult now. When I meet someone new and they're looking at me funny, and I know they're wondering what's going on with my eyes, I just tell them, "Oh, I have dancing eyes. I've had it all my life." Then they get over it and life goes on! I've learned a lot more about it from this website and others and that has made a big difference. I really didn't know anything about CN until a couple of years ago.

Sorry for the lengthy rambling but it is SO NICE to finally find a discussion group of other people who have the same problem and know where I'm coming from! Thanks to whoever runs this board. It's great.

This is my first time on this web-site. I found your article to be so easy to relate to. I have not ever talked to anyone else with 'dancing eyes' and I also have optic nerve hypoplasia. I see about 20/110 and I have had this since birth.

I have struggled to fit in too. I am 42 years. I have a good job. I am a computer programmer. I can not imagine having min. wage jobs. I can not exchange money very fast. I am really bad at being low vision. I do not use aids and I hate having to use things that bring more attention to me.

I will continue to read on this web site and learn how much of my personality is formed by my vision issues. This has been interesting

I never realized there were so many people with N/I was wonderingg if anyone who reads this had albinism as well? I just wanted to say that i have gotten very little correction from glasses however contacts are a different story. I have astigmatism so i need toric lenses they corrected my sight from 20/200 to 20/70 when i could only get 20/100 from glasses so thats can be an option. the lenses also slow down they eye movment so that helps a lot too:) hope this helps anyone

Hello,to all of you nystagmus suffers my name is sophie potter and i have mild nystagmus and i am 15teen years old i live in newcastle australia
do any of you nystagmus suffers live in australia
or even newcastle cause i would love to meet nystagmus friends and penpals