This is a response to an article titled Nystagmus, Curse or Blessing? by Felicia Brown-Grinstead. I am using an excerpt. I encourage you to read the article in its entirety either at the above link or re-posted in this blog here.
The following is an account of one woman’s experience with having nystagmus and how it is affecting her job search.
“I am a college graduate holding a Bachelor of Science Degree in Business Administration with an Accounting Concentration. I also have an Associate of Arts Degree in General Education, both earned. I thought that accomplishing these goals ( with no special programs or help ) would demonstrate my ability to start and complete goals, would show that I am capable of handling challenges and if given a chance would make a good employee. However, I guess I was wrong.. I know that accounting would be a hard sell because of my eyes so I had a plan B that also failed. I took and passed CBEST ( California Basic Educational Skills Test ) so that I could work as a substitute teacher if unable to find employment in my degree field. However, I have not had luck in that area either.
As an African American woman, which I feel isn’t as much of a barrier as it used to be, I have had to endure not only the barrier of being Black but of being vision impaired which is the biggest barrier. Standing before perspective employers with my eyes moving back and forth has been a humiliating experience, which usually results in no employment.”
Ok, there’s a lot going on in these passages. First of all, I’ve never heard any dialogue on race and nystagmus before, and I think it’s a really interesting topic. To all my racially diverse, shifty-eyed friends, have you had to overcome prejudice with both your nystagmus and your race? Do you feel like both work against you? For you? Bravo to Felicia for raising this topic.
Now, as far as employment, I’m going to be a little bit critical. I believe there are two ways that nystagmus can get in the way of getting a job. The first is the obvious one; employers (and people in general) can be uncomfortable with the eye movement. If they choose not to hire someone based on their eye movement, if it doesn’t affect their ability to do the job, it may be illegal. It certainly isn’t right, and people with nystagmus have a right to be unhappy with this kind of behavior.
The second reason is perhaps the most common, and one that we don’t like to admit: the social difficulties of living with nystagmus can psychologically affect us to the point where we really lack any sort of self-confidence. I have found that generally this is more crippling than the actual condition itself. Even looking people directly in the eye is difficult, which doesn’t bode well for interviews. People with nystagmus are held to the same standards as anyone else interviewing for a job. If you can’t look someone in the eye, they won’t want to hire you.
The good news is, unlike the actual nystagmus, lack of self-confidence can be temporary. Social skills are learned. Interviewing, practicing maintaining eye contact (or for those with whom focusing is more difficult, at least looking someone straight in the face), and even just having multiple interviews all help overcome this particular obstacle. I’m not saying it’s easy to get a job, I’m just saying it’s possible.
And Felicia does touch on the fact that nystagmus can in fact make someone a GREAT employee. It gives them a determination and focus that perhaps others do not have. It’s so important to remember that if you put the work in and are qualified, not only do you deserve the job, but you could be better at it than someone else because of your nystagmus.
Now I don’t know Felicia’s situation, so I can’t comment on why she is having trouble finding employment. It definitely could be the nystagmus. It could be that the people she has been interviewing are prejudice. It could also be California’s incredibly large unemployment rate, or the competitiveness of finding good accounting jobs. Who knows? All I’m saying is there is no reason to be fatalistic about finding a job when you have nystagmus.
The trick to living successfully with nystagmus is to not let it be your excuse for not doing what you want to do. Now, there are things like driving that we will continue to struggle with, but something like getting through college or finding a job is COMPLETELY in your capacity. Look at Helen Keller. Completely blind and deaf, yet she earned a bachelors degree, which in her time, was incredibly rare just for the fact that she was a woman, let alone visually (and audibly) impaired. She continued on to build a very successful career and supported herself and her retinue of helpmates. If you have the intelligence and the drive, you can do most anything you want. Will it take more work and effort than a normal-sighted person? You bet. But it will also be much more satisfying when you get there.
The time after college is just a difficult one for everybody. So many people I know are struggling to find a place in the world where a bachelors is becoming more and more common and jobs are harder to get in general. So if you have nystagmus and you struggle to find a job, know that you are not alone, and that group includes those who don’t have nystagmus.
What do you guys think? Have you had a hard time finding a job because of your nystagmus? Do you worry that your kids will run into this obstacle? Do you think I’m dead wrong and Helen Keller was a rare case? Do tell…
Hi Jo. I’ve just discovered your blog (thanks to Wikipedia) and a lot of what you say resonates with me.
A little background on me for context. I have Nystagmus and pretty low vision generally, though I’m able to read standard size print on a computer screen or in a book. I do have a problem with reading things on signs, such as in a restaurant, something I think you touched on in another post. I also don’t drive, though I can and do bike.
My two cents on the job issue. I haven’t found Nystagmus to be an insurmountable problem. Since I don’t drive, there were some jobs that obviously were off limits to me because they directly involve driving or realistically require driving as part of the work (for example an outside sales job). Also, geographically I’m limited. I live and work in New York City and it’s very easy to get around by public transportation here. I couldn’t so easily take a job in a very suburban area that lacks public transportation.
My take on job interviews is pretty similar to yours.
As far as interviews go, I really haven’t noticed any problems. I’ve had my current job — I’m an urban planner for a consulting firm — for 11 years. During my interview my boss didn’t ask anything about my eyes. I got the job (in 1998 when the economy was zipping along). A couple weeks into my job the boss asked me what the issue was with my eyes, because he noticed that I look pretty close to the computer screen. I explained that I have to look closer but that other than not driving or being able to read signs at a distance I could do everything else. He said ok, I said ok, and it really hasn’t been an issue.
To be sure, there are differences in how Nystagmus manifests itself in those of who have it and in how other people perceive it. But in my experience most people, including people making hiring decisions, judge me based on things besides my having Nystagmus.
Not to be obsequious, but I think you’re also right about the eye contact issue. I know that in all types of social situations I sometimes have a problem with making eye contact; it’s on a sub-conscious level rather than a deliberate thing. But, usually within a few seconds I ‘catch’ myself and make a point to make eye contact with the person I’m talking to. It’s a challenge, but I think one that can be addressed.
One final thought. When I started reading your blog it struck me that you have Nystagmus and you have a job that requires a lot of reading (and presumably writing). As does my job. Of course we’re both fortunate that we see well enough to read conventionally (at least that’s my impression from your blog). But I think the lesson here is that while a person with Nystagmus probably will not get a job requiring superior eye-hand coordination, that in many cases a job requiring extensive use of the eyes is attainable.
Thanks for providing a forum for exchanging these thoughts and happy new year to all! And, best of luck to everyone who is looking for a job in this economy.
Hi I’m Lee from Malaysia. I’m in my 30s. I have live with nystagmus ever since I was born. I know my eyesight is poor but I never thought that how much it affects my life. I did not find any problem in job interviews however I do find difficulties when carrying out my duties. In order to read, I need to stick my face as close as 1 feet away (or closer) from standard prints or computer screen. And the eyes get tired easily at such distance. It is difficult to read out loud fluently because the reading speed is slow. In most of the things I do, the pace is slow. Less observant and responsive than others. Sometimes when a person is far away and we can only use sign language to communicate, I can’t get their message. I do drive but I usually didn’t have enough time to read the road signs (thanks to GPS devices). I’m currently self employed and I’m quite comfortable of what I’m doing now.
Beside work, I do sports that put less stress in the eyes such as running, swimming and hiking. I love photography but I couldn’t get myself into professional level with such poor eyesight. I love reading but it is slow and tiring. As of social life, many people don’t understand even if it is well explained to them because they don’t see the way we see. And we can’t see what they see. Anyway Jo, thanks for writing this blog and thanks to the rest who shared. Sometimes I do feel depressed because of all the personal and social consequences of this difference. But even though we know we are different, I believe we still can pursue our dreams and don’t let this stops us from doing what we wanted to do. All the best folks!
The problem is no one can ever site specific jobs or fields or paths to success that are ideal for people with varrying degrees of Nystagmus. It’s competitive out there. I’ve been unemployed for years. The severity of the Nystagmus varies in each person individually. But let’s look at the common problems associated with the condition and try to come up with specific jobs or careers and options. So much of learning is visual. In my case
I can’t drive.
I can’t lift heavy things.
I am a minority.
Making eye contact is problem.
Small print is a problem.
The nystagmus varries throughout the day.
Lack of sleep renders me almost blind.
The psychological consequences of dealing with this disease have taken their toll on me. I’m done, I give up and I’m alone. So much of our communication is done through the eyes. So much politics in the work place is associated with behavior.
When you google jobs for the visually impaired, all you come up with is something like tuning a piano. They can put a man on the moon but they can’t cure this.
What about gene therapy, what about pills, what about anything to get rid of this hell that keeps so many of us on the fringe of being “able” to participate in a society that does not seem to understand or have the time or money to deal with employees that might be liabilities or need special needs. I never wished this on anybody but I wish there were enough people with it so that we could get the money and the voice to put some research into something that should have been cured by now.
You are right, there are some things that we cannot do. I understand the frustration, the rejection, the lack of confidence. It’s hard to explain to people.
There are a lot of conversations about treatment, and there are fundraisers and studies linked with nystagmus, though most of these are in the UK. In the US, they are experimenting with surgeries such as tenotomy. Even so, like many eye conditions, there is no cure.
I would like to offer you some encouragement. Don’t give up. There are many of us out there going through the same things. Sometimes just the fact that we get so discouraged from it can affect our chances at a job; we can give up before we get going. I know you can do it. Shifty-eyed people are STRONG, I really believe that.
Good luck to you!
On the issue raised by the woman who is quoted in the article of being African American and the accompaniment of Racial Discrimination with the Adverse affects of Nystagmus, I would like to say, that Nystagmus can affect anyone and people sometimes forget that.
Gender, Sexuality, Race, Disability [other than Nystagmus] and other social factors and perceptions can be coupled with the discrimination Nystagmus sufferers experience and in some cases amplify the effect. When I was younger a mixture of these factors lead me to a period of depression where I reached the lowest point in my life.
Yes you can overcome it, but support isn’t always there and not many people can relate to what you are going through, the whole process can make you feel incredibly alone.
My name is Rob and I too have nystagmus. I try so hard once I get a job to perform the tasks and duties asked of me and while I think I am doing the job correctly I often find that I have not done it the way it was supposed to be done or some how so far from right. It has left me feeling unconfident about most jobs I have come across. Even though places do seem to give me a real fare shot. Now I hate to seem like a antagonist, its not my style usually, but these days it seems to me that disability my be the best option I wanted to post this hoping that there may be some of us out there along with Joe who have some sort of success to keep from just getting on the gov. tit and giving up on my career path.
My name is Frank last September 2010 I woke up in the morning and could not focus. I was later told I had nystagmus but still to this day know what caused its onset. I have not driven a car since then and I was a Police Officer and again have not worked since because of vision dificultys. I Just started to drive again but not because the Nystagmus is gone but because I have begain to adapt to it. I am writing to thank you for you blog.
Thank you for so this blog. My name is Ashley and I’m a recent grad at Ohio State where I recieved my B.A and though I have worked through my whole college career its hard find a full-time job. I could emphatize with Ms. Felicia with being Black and having Nystagmus somedays its extremly hard other days I just dont give flying rats ____ (you know what lol) but truthfully what my parents always told me was to be persistent and never give up. All these stories were refreshing and made me feel better about my nystagmus becuase I have yet to meet anybody with “wiggly eyes”. Jo thanks agian I’m really thinkig about doing a blog now, it was refreshing just to write all of this down.
I am 15 and never really done a lot of research on nystagmas untill now. When I started doing research I was shocked. I never considered my nystagmas as a disability. I always considered it as something that I have to deal with, like anyone else with sight problems. I am honestly kinda depressed because I never considered not being able to live a normal life. I started freaking out and worring about my future. But, then I really sat down and thought about it. There is no reason why I should not be able to live a normal life. I fully plan on getting my drivers lisence (even if I do just barely pass the eyesight test : ) I fully intend on landing the job of my dreams and dating. I am lucky enough to grow up in a very excepting town. I was never really bullied badly and always have had friends. But, everyone is bullied sometime in their life and I don’t feel to bad about it. I never really hear about it anymore besides that occasional kindhearted question or twichty nickname (we all know what I am talking about). I know my nystagmus is not nearly bad as others. Mine just makes my eyes back and forth. Also my eyesight is not that bad. Like i can read small print books if I get close enough and use the computer without problems. I have caught myself not looking people in the eye and my nystagmas has made my shyness worse. But, I have noticed as I have grown up my confidence has gone up and I meet people in the eye more (or atleast try to). I really don’t think anyone cares about my nystagmaus that much exspecially if you calmly explain it to them. I am just saying my nystagmus does not make me any less pretty, anyless smart, or kind. I think people need to stop obsessing about their nystagmus and except it as part of them and something they need to deal with. I feel for people because it can be hard exspecially if someone says something about it and people don’t always understand. But, this will not stop me. Sometimes things like this make you stronging then other people.
hi my name is shane from the uk does anyone else find that you get stressed alot easyer because of ur nyst5agmus i was born with it . i am really at rock bottom with it keep loseing jobs and the driving thing is a bigggg thing i just cant come to grips with fills like everyone of my friends are getting cars good job with work vans and im goin nowere all was angry and is getting onntop of me all i want to do is get a job and be someone but it keeps me frome doin everything. need money but the goverment says its not a big problem if i can drive and get a job then its a big problem to me ignorant makes me angy soz to put downer on it ppl just i finding it so hard and close to blowing point
hi my names Elizabeth and I struggle with nastagmous too. I just cant seem to find a way to deal with it I mean its there so noticeable and its never going away. im so depressed im 20 years old and I feel I could so much further than I am without this. im a janitor for weekends and believe me im thankful. I have a boyfriend and a wonderful son and im thankful also but how can I ever give my son what he needs with this. I never pictured myself as a janitor my whole life I had big plans until I realized what a big deal it is. what if something happens at we split up im going to get my son taken away because I cant support him or myself its just awful I go crazy everyday trying to find a way around it that I would be happy with my life but I feel it interfere with every single little thing some people try to talk to me about it like its nothing and everything will be fine but it kills me because in reality I know its not like that. I wanted to drive I cant I wanted go college and have friends I cant its like what can I do its way more embarrassing than it seems to people I get they try cheering me up but we live in a cruel world and that’s just reality not a lot of people give you shots in this world especially with this I don’t know what to do…
H.i my name is Rysha, I am 22 years old and I am a senior in college. I will be graduating in one month with my bachelors in social work and psychology. I was born with congenital nystagmus and it has always been a struggle for me to relate to sighted people. I struggle with depression too, being a senior now and facing the reality that I will be for the first time completely on my own is something that difficult to deal with. honestly I’m really scared, I’ve been reading other blogs and a lot of people with N are saying that its difficult to get and keep a job. somehow I’ve always been under the impression that if I excelled academically which I have, that it wouldn’t matter that I have a visual impairment when it comes to trying to get a job because my resume would speak for itself. currently I am waiting to see if I will be accepted into graduate school. I want to become a vision rehabilitation therapist so that I can help others who are newly visually impaired. I hope that I get accepted into my program because honestly I’m not sure what else I’m going to be able to do while having N
Rysha, congrats on your upcoming graduation! If you successfully completed your bachelors degree, I have no doubt you will be successful in whatever career you decide on. I don’t know the extent of your nystagmus, but a good trick for me has been to fake confidence until you actually feel it. And you will. As with all life skills, it takes practice. Also, please note that there are many people without nystagmus who are also scared about going into the work force. Your reason might be your vision, and theirs might be something completely different, but we all feel it. You are not alone!
I know a lot of people really feel like nystagmus has limited their job opportunities, and this may be true. Especially for people who live in areas where public transportation is limited, or they want a job that requires driving/piloting. The military can be a challenge. But for the most part, nystagmus won’t limit you. A lack of self-confidence might, and I suspect this is what holds a lot of people with nystagmus back. But the good news is, that is something that you CAN control. The fact that you have completed college says a lot. The skills to be a successful student overlap a lot with the skills to be successful in a career. Don’t ever let other people’s limitations stop you from going for whatever you want.
If you want to practice your job skills, try to find a place where you can volunteer! The graduate program you applied to sounds awesome! Perhaps you can get some good experience at a facility that works with people with disabilities (vision or otherwise). Or maybe a senior living facility. This will give you some great work experience and will also help you pick up those confidence skills with normal-sighted people.
Good luck with your future endeavors, whatever they may be. I’m sure you will do just fine 🙂
my name is ;praveen
i am suffering from nystagmus.from childhood,and i complete my graduation in 2011 at the age of 21 years,after completion of my graduation i faces lot of problems in society due to the nystagmus eye problems,, i feel i am unfit from any job because my vision is 20/100 & my head is also shaking,,i also using magnifier glasses but it very little use to me.,
currently i can not do any job and depends on my father salary.
finally i can not get answer from anyone which job is suitable with nystagmus
K praveen from INDIA.
Pravin in India there is nothing help from government for nystagmus person.
Graduation kis field hai bro
I am JAINISH SINGH from India
I am suffering from nystagmus
This is from my birth
In India job opportunity for nystagmus is not good
Government give benefit to them who is coming in 40/% visual impairment and job is giving in government sector
But less than 40% visual impairment person did not getting benefit from government as well as job
Because they are blind for them
Life of nystagmus person is really hard
Sometime thought came in mind quit this life
I am doing professional degree engineering in Electrical engineering
But job option is not
Guys we are not disable those who are not understanding us are mentally disabled
I cannot thank you enough for this blog. I’m now 31 and for the first time, I find myself truly seeking out others with CN. I’d like to share some of my story as others have in the hopes that it will help someone with this disorder.
I grew up in a normal family with loving parents but was born with CN with a visual acuity corrected to 20/40 in one eye and 20/50 in the other. My parents never wanted me to feel different, but they also did not see the world the way I did. I have never been able to read menus, I don’t enjoy live sporting events (cant see whats going on), I haven’t tried gold because I’m worried I would lose my ball, and I have always struggled with thinking others are judging me when I look them in the eyes. I could never see the board in school and would pretend to do so because I did not want to ask to sit closer. I was teased for having shaky eyes throughout my youth. I always had a desire to be good at things and I can say I was always able to participate in sports but was never going to be a star due to my decreased reaction time and hand eye coordination.
I was a hard worker as a kid and got into a really good college. What I found was that I could spend hours reading albeit slower and my face closer to the book or screen. This led me to be able to do good enough with grades and standardized tests to get to the college I desired l. A point to make is that I struggled with standardized tests all of my life and it took me until the age of 30 (8 tests in) to apply for additional time on one. I would highly recommend that to anyone with CN, it was so much help physically and emotionally.
Like all other teenagers, I just wanted to fit in and be like everyone else. This led to typical teenage shenanigans. College was fairly typical for me but I again had the huge problem of never being able to see the board. I found myself taking short cuts (copying assignments/cheating) because I did not have the discipline, self awareness, or courage to ask for help where I needed it. People who had the notes for class and were normal paced readers, did their work and then went out and partied. I never had the notes in the first place and didn’t want to put in the extra time I needed to read but still wanted to be socially accepted. I did study hard at times, but mostly desired social approval even in college.
I did end up going to medical school the non-competitive way (in the Caribbean) after college. I had taken a set of standardized tests which were used for admissions to medical school with an average score. I COULD not finish these tests in time because of CN no matter how hard I tried. I did not realize at this point that there was even an option for additional time. I realize now how I’d rather minimize my vision impairment and do worse than acknowledge it and potentially do better with accommodation. THIS is a common theme in most of my life up until the last two years.
There were parts of both med school and residency which were procedural heavy. These required good hand eye coordination of course. I struggled immensely with these parts. Now there were certain things I just couldn’t do like be a functional surgeon. I remember being scolded by an attending surgeon physician while being in a surgery with him during med school rotation. It was all because I could not “cut the string” for him after he had sutured. I just couldn’t see it, it was too light in color and thin for me to see and it made me feel empty on the inside. At this point in my life I was still minimizing my vision deficits and doing worse rather than acknowledging them to others and probably having things modified to suit my abilities.
An insecurity developed and I simply decided to not try at anything requiring any type of work with my hands. I had built up a mental block about these parts of my job, and would either find a way to scheme out of them or just feel bad for myself that I couldn’t do them. I used my lack of wanting to be different as a way to rationalize my decreased effort.
Currently, I am forced to do many tasks which require hands on work.
What I can say is that when I ask for help with things, people have been more than willing to show me at my pace and with accommodation. Visuo-spatial skills do not come naturally to many of us but they are not unattainable. I take longer to learn these skills and its the combination of asking for help, putting in more time than others, and being emotionally strong that has given me a chance to be comfortable with what I do. I could have picked something easier, but I chose something that is more challenging given my eyes. What I have learned is that I find ways to make it work even when at times I just want to give up because it comes so easy to others. And others “see things so much better and faster” than i do. But I
At the end of the day I like to think that everyone is thinking of me as much as I am of myself and its just simply not true. Nobody really cares as much as I do that my eyes shake. Yes they may notice it, but if I act unphased and confident, their awareness of it is an after thought.
Today I have the average persons problems (want to make more, want to be a good dad, and want to be a good husband). I still have moments where I get pissed that I read slower, and react slower but then I remember I can be a little grateful for the things I do have and above all else I can be SMART about how to best accomodate myself. It took me a long time to understand how to set myself up for better outcomes in life. I still need to work on it every day but to me it feels refreshing to not feel sort of prisoner to my vision.