As a person who has been legally blind my entire life, it is not the things I can't see that make things difficult, it was not not fitting in or people understanding. My vision under the best conditions is 20/200 the very highest end of legally blind. I can read print when it is close enough. I do not need a cane to get around although I have one for certain situations and identification. I use tools like ZoomText, Mac Zoom, Monoculars, CCTVs. My vision requires these tools to work comfortably. On the other hand, I can drive with a bioptic. I have heard many comments throughout my life including: "Why don't you get glasses", "You are blind", "Are you on drugs", "Why are you holding book so close", "Faker", "Oh you think you are so cool wearing sunglasses all the time", "Are you stupid, you signed the wrong line". This middle ground is so hard for others to understand and what has been the hardest for me. As a young child I wished I was totally blind so people would know I could not see and that I would fit in somewhere. I think the best way to explain it would be through a series of different scenarios. I share these not as whining or poor Suzanne but so that people can understand this middle ground. I go to conventions or meetings for the blind like American Council of the Blind or National Federation of the Blind and don't feel I fit in there either like I am not blind enough. I have never tried to pass - be taken as fully sighted. I have always been open about my vision and was not ashamed to use tools like monoculars in school. First off even if I wanted to fake that I could see like everyone it would not go well due the the squinting and having to look at things super close. Also I have no reason to hide it. There is no shame in being blind or legally blind.
Medical Eligibility from DMV
I often have to feel i have to justify I am blind enough for certain things or sighted enough for others. Driving as a legally blind person really makes me feel this way. When I talk to blind people about it, it is like if you can drive how can you be blind. When I talk to sighted it is how can you be a safe driver and are you sure you are legally blind. A big fear for me is not finding people when I need to meet with them for example with school group projects. No matter how many times I say I am legally blind and they see me using zoom and cctv in the classroom, they can't seem to get that I need them to tell me exactly where they are. I can't see into the study rooms to find them. I get around school really well, what people don't know is prior to the semester I go and learn where all y classrooms are. A fear of mine is going o n the first day and a sign being on the door that the class is moved because i cannot see the room numbers unless I am right on them and the over the door ones I cannot see with out my monocular. Another example is restaurants. I always worry about finding my group if they are already seated. When I ask the host, I just get pointed in the right direction. I will say, "I am legally blind can you show me to the table" which is followed by a confused look and questions like"Why don't you get glasses". I will usually try to explain about my vision and glasses not helping as it is an opportunity to educate.
MacBook with Magnilink cctv and large print keyboard skin
When I went to the Grace Hopper Celebration of Women in Computing, I was concerned how to make sure the recruiters at the carer fair knew I was legally blind. If they didn't know they would make their own guesses on why I was squinting and for some reason the guess is never a visually disability. I knew I would have to get very close to figure out with booth I was at and also hold any reading material right up against my nose. On the other-hand, I did not want to just introduce myself by saying"Hi My name is Suzanne Germano, I am a computer science student form ASU seeking a summer internship and I am legally blind". The solution I decided to use was to use my cane that way the recruiters would know I had a visually disability but I was not making it an issue and my resume spoke to my academic achievements. I have had so many situations where I hear through the grapevine that I am a bitch because I did not wave back at someone that I did not see. I don't "look blind" so people really do not get what I cannot see or even know I have a vision problem.
Dual 27 inch monitors with ZoomText
When I did my internship at USAA, I decided to send an email to my manger to share with my entire group about my vision this worked out well. They knew things needed to be larger or that they may need to show me where a room was. But obviously, the entire company does not know so I still run into issues of not recognizing people, not being able to participate where color vision is involved etc. One person walked by my cube and said "Boy you really like that print big" to which I replied by explaining of my vision. I sometimes wish I could just wear a sign that said I am legally blind so people would know. :-) Some people would say just use my cane on a regular basis as identification but then I get the other side of it - "You aren't blind".
So far most of my driving has been to familiar places or to places that I have practiced the route with Chase. I have only had my license for five months now and only have had my bioptic set up to see all the light colors for 3 months. There is a certain level of confidence that comes with driving to places that I have driven before. During my ten weeks in San Antonio, I was very confident driving my routes to USAA, the mall, the gym etc. Even on days when pouring rain came out of the blue, I didn't have any worries.
Having this new freedom is amazing beyond words but my real goal would be to just jump in the car and to go to a place alone that I have never been. I know of other bioptic drivers who travel and rent cars in new cities and hope to do that one day. As a new driver, I have certain concerns about going to new places, for example, will I end up in the wrong lane and not be able to turn or be forced to turn. So far, I think I am more scared of the "what ifs" and just need to do it. So far any time I have tried going somewhere new, everything has been great. I have tricks I use to plan my route and make sure I am as prepared as possible.
Google Map Route Choices
First, I Google map the possible routes. I either pick one of those I like or decide a better route based on what I know. I prefer highways over tons of surface streets. The chances are people aren't going to be popping out of nowhere to cross the street on the highway. I will then do a satellite view of the area. I check to see the best way to my destination. Is there a signal that I can use? After that, I use street view to check major intersections and highway on/off ramps to know ahead of time the best lane to be in. I use the navigation in my Cherokee but I cannot see the detail especially with how dark my sunglasses are. I strictly listen to the navigation system. This route is to an area that I have never been. It is a hotel for the National Federation of the Blind of Arizona Convention. Chase offered to be a silent passenger so I could do a practice run. I did not want him to say anything. I want to know I can do new places completely on my own. The trip was flawless and another step toward independence!
I got my license in March 2015. All of my driving was done in Phoenix/Scottsdale. In June I was to start an IT internship at USAA in San Antonio and after waiting all these years to finally drive I wanted to drive myself to work each day. As I was a new driver and we were still tinkering with the best filter setup, I really only drove in familiar areas and I had done very little night driving. Chase and I decided it would behest to arrive in Texas a week early so I could find good routes to the places I wanted to go and to practice them. I am so glad we did! The signals are very different from what I am used to. Most have yellow around them instead of black and there is not much extra around the light itself. I am used to nice black rectangles boxes around the lights. Many also just dangle from wires. I don't think I would have been able to drive without the set up I discussed in my previous blog that allowed me to see red/yellow AND green lights! I have to be closer here in San Antonio before I see the red signal but with the scope I can check. If I see all black through the scope the light is red or yellow if I see the green, well, its green.
Another difference is that the roads are lighter in San Antonio making the lines less district something else I had to adjust to. The frontage roads along the 10 are crazy! People fly across 3 lanes without looking. Even Chase didn't like the frontage roads. I found a good route form the apartment to USAA which avoided the frontage road completely. We mapped my routes in my nav on the Jeep as trips so we would force it to go the way that I wanted to go to each place. I have routes all set to USAA, shopping,the mall, the movie theater, nail salon and the gym. Being a new city and a new driver,I still do not just venture out places. So, for the first time in my lifeI am driving myself to work! Still hard to believe!
As an achromat, I am completely color blind - only shades of grey. One of the biggest challenges driving is seeing the different color lights. When I wear brown or grey sunglasses, I can see green lights, but I cannot see red lights or brakes lights. When I wear red contacts and red filters, the red lights and brake lights jump out at me but I lose the green lights.
Most achromats make a choice to either see green lights or see red lights but do not have a way to see both. I chose red lights. I feel much more comfortable being able to see brake lights. I drive on busy streets and highways so brake lights are important to me. I did not want to just rely on closing the gap on the car in front of me to know he has applied his brakes. Overall, this was not an issue. I knew when lights were yellow and red and if I saw nothing it was green, no worries. But, I could not turn left at any intersection that had a 5 light signal - solid red, solid yellow, solid green, yellow arrow, and green arrow. When the green arrow comes on the red solid is still lit so I have no idea that the green arrow is illuminated. If this was only a few intersections here and there, I would not worry about it but it is at many intersections.
I have spent the last several months researching contact lens colors and filter colors that will allow me to see both red and green. Image to the right shows these signals. (Signal Image). I read a blog about another person with a similar condition and he used red filters for carrier vision and then did not have red over the bioptic scope. This would allow seeing the green lights though the scope. From what I gathered he did not have any filter on the scope which would be to bright for me. I was able to borrow a ring of colors from noir-medical. NOIR does speciality colors including dark reds. I also had to play with my contact lens colors. If the lens was pure red, I could not get green regardless of filter color. I tried a dark brown but it was just to dark with the red filter and I lost detail. Right now it appears the ones that will be best are the NARZ (black with red) from Low Vision Center of Indiana and some I had custom made brown with a touch of red through Dr Hixson in La Mesa. I had to ensure I had enough red to get brake lights and red signals to still pop but not so much red that I lose green completely.
NOIR color ring
The next step was the filter and the filter cap. I went to see Dr Yevseyenkov at Midwestern University Eye Institute and I had him order a filter cap for the Ocutech in NOIR color #07 2% dark amber. With this cap and the correct contacts, I can see the green lights really well.
Custom 2% dark amber filter cap
Next the filter that would have an opening for the bioptic scope but give me the red and allow no other light in. This was a challenge. I ordered red sheets that were the same as what Low Vision Center of Indiana made my red filters from but had the issue of how to get a perfect 1/2 inch circular hole lined up right for the scope.
What I really wanted was NOIR FitOver sunglasses cut out so the Ocutech would slide right in. Again, how to do this? How would I cut polycarbonate to be just the right size. I had heard it could be done with a Dremel but that meant buying a Dremel, trying to find the right bad and trial and error to get the cut. I ordered the NOIRs in #93 4% red, #90 red, #465 yellow and #23 grey. I also ordered one of the less expensive colors for a trial cut.
NOIR Fit Over
I really lucked out. I contacted my Computer Science Capstone sponsor at Arizona State University and asked if cutting these was something that the engineering department could possible do. It turns out I was able to get them cut on the CNC Milling Machine. The machine shop manager, Leonard Bucholz, offered to help me. I am so grateful for his time and expertise in
Arizona State University Machine Shop
trying to figure this out. He met with me on multiple occasion to get the cuts right. We are also discussing an option for something that would be like a gasket in between to ensure no light gets in. I picked up my glasses Lenny did a great job. He worked to get the cut as small as possible to prevent light from getting in. I have a yellow pair for night and for day two different reds and a dark grey. They work exactly as I had hoped. When I look the the sunglasses themselves, I can see brake lights, turn signals, yellow and red lights. When I look through the scope with the amber filter I can see the green lights. I can now tell if the light that is on is the green solid or the green arrow! There is some light sneaking in between the Ocutech and the glasses so I am working on what I can put there to block that. It isn't horrible but does cause
NOIR Fitovers custom cut for Ocutech VES-Sport
issues depending on where the sun is at the time. Overall I am extremely pleased with the set up and very grateful to Lenny form Arizona State for assisting me on this project. If you have any questions, I can be contacted at suzgermano@gmail.com
As a child who was legally blind, I had been told I would not be able to drive. As I approached the age to get a license around 1978, I started looking into bioptic glasses. Bioptic glasses are glasses that have one or two scopes on them. These scopes magnifier from 2-4X If you can get to a certain visual acuity with the scope you can drive in most states. The specific requirements vary state to state. I was lucky that I was in California which had bioptic driving since about 1970. The pair my eye doctor tried were similar to these.Mine had a single 4x scope attached and the carrier lenses were tinted. So the eye doctor took me out as a passenger and asked if I could see brake lights, signal lights etc. I could not. The problem was there was no protection from the light with the scope and no protection form the light on the sides of the glasses. I also did not know about red contact lenses at this time. I could not see the red lights or brake lights all. My dream of driving died that day and the doctor did not know how to deal with the specific issues related to Achromatopsia- total color blindness, severe light sensitivity, along with low visual acuity. If it was just the visual acuity of 20/200, I would have been driving but the other two were the problems. So for the next 25 years I resigned myself to the fact I would never drive.
In 1995, I got my first set of red central contact lenses from UC Berkeley. Here is an article about them Seeing the World Through Red Tinted Glasses. They were amazing when I combined these contacts with sunglasses outside, I was not blinded by the light. They also have the effect of allowing red light through. I could see the red signal and brake lights. It does make greens go dark so I could no longer see the green lights. None of the eye doctors mentioned driving so I continued to think I could not.
My Ocutech
The chance appointment that changed my life. In 2013, I learned about Dr Windsor of the Low Vision Center of Indiana. I discovered he specialized in Achromatopsia. What a change most eye doctors have never heard of it or have any idea how to help. I decided to see him in May 2013 to try out
My red and brown filter
different color contacts lenses because I found my reds were not the right color for school inside the classroom. He asked if i wanted to be evaluated to be able to drive. What!!!! Really!! Drive!! Hell yes i do!. So he tried the ocutech bioptic on me and had me read the eye chart. He said I was a good candidate but it is a long road. We have to find the right color combination of filters and contacts. Finally in Dec 2013, I received my Ocutech but I had to wait until May 2014 to go to Indian again to try to figure out filters. In May I went back to try out filters. I needed sun but it was overcast the entire time I was there so we pretty much had to guess. We decided on NARZ contacts and red contacts and the filters would be custom made red in the front and brown wrap around to protect me from the light coming in.The double layer of red made the brake lights and red light really pop out. I spent the next few months as a passenger practicing with the bioptic. In Oct 2014 the big day came to start drivers training. My training was through Driving to Independence. I did about 35-40 hours of behind the wheel with Jill and Jason. The red filters make it so I do not see green lights but I feel much more comfortable seeing the brake lights and red lights. If I don't see a
Troublesome signals for me
light then it is green. The only presents a problem making left turns where there is a signal with 5 lights. It could be a protected green arrow or a unprotected green solid.They do not go in the same order each time. It is often dependent on traffic. So, I am working on trying to figure out a combo that will work to see all lights. What I am going to try is red filter for my regular vision and amber or dark grey/green over just the scope. This is getting very pricey. Every pair of contact i try are $200-450 per pair and if they don't work I just have to try another. I read a blog about driving and the person had the same issue. It was called My Miracle Drive. i saw his set up and I am going to try it. He uses NOIR red fitovers that are cut to allow the ocutech scope to fit
My Goal
through. I ordered a custom filter for the scope and will try my NARZ or brown contacts. I need to cut the NOIR fitovers and will hopefully be having that done on a milling machine at Arizona State.
On Feb 6, 2015 I took my behind the wheel driving test and passed!! I did not get my license that day because for bioptic driving teh test has to be sent to medical review along with my form signed by an eye doctor within 60 days stating that I can see 20/40 with the scope and what my vision is without the scope. A few weeks later
It's official!!!
I got the paperwork form medical review to take to the MVD to finally get my license. I went of Friday March 5th and the computers were down for the entire state of AZ. No license. Finally Monday March 9 I tired again and came out with my first drivers license at the age of 51!!!
There is still a lot I am working on. The green lights are one of them. Another issue is the setting or rising sun low on the horizon. When the sun is low but behind me the lights don't look right I can't tell them as well. Sometimes I think the yellow is lit but it is not. When driving into the sun when I dip to use the scope I am blinded but the sun coming straight in. I need to either avoid this time of day or find a solution. Right now I drive familiar places. I have been doing more freeway practice with Chase so I might be ready to make a solo trip down to ASU. I just wanted several trips to get confident with lane changing and traffic merging in and out.
Upcoming posts:
Shopping for the best car
Tricks I use when driving
Problems I face
Here is a video of me driving. The iPhone slipped so it is crooked. I will make another.
I decided to change the focus of my blog to talk about life with Achromatopsia; so I decided to repost this blog from Feb 2012. Look for new post on my journey to driving.
As I
squint and hold the book right up to my nose I hear “Why don’t you get better
glasses?” I have heard this many times. I want to scream “Seriously! Do you
think I am choosing to read this way? And never drive” but I bite my tongue and
respond “I have a visual condition that cannot be corrected with glasses or
contacts” They give me a strange look and walk off.
I was born
in 1964 and when I was about 6 months old my parents noticed I reacted strangely
to light and there was a shaking of my eyes. This shaking of the eyes is known
as nystagmus. “Nystagmus often accompanies vision loss acquired at birth or
soon after. In achromatopsia, it may be 3 to 6 months before the nystagmus is
observed by parents. In infants with rod monochromatism, the nystagmus is
usually rapid frequency and of low amplitude (fast moving, but only a small
angle).” (http://www.achromatopsia.info/nystagmus/) My
parents began taking me to ophthalmologists and specialists. It was discovered
and had extremely reduced visual acuity, totally colorblind and very severe
light sensitivity. The diagnosis was complete Rod Monochromatism a form
of achromatopsia. (http://www.achromatopsia.info/) My best
correct vision acuity was around 20/200 which made me legally blind. I
was wearing glasses and sunglasses by the age of two. If someone is
20/200 they need to be 20 feet away to see that that a person with 20/20 vision can see 200 feet away.
What I can
and can’t see. Often I am asked what I see compared to someone with 20/20
vision. This is hard to answer since I don’t know what they see. So the best
way is to give examples. If I go outside without my red contact lenses and
sunglasses all I see is brightness. I cannot even see a car or house. I am
totally colorblind so everything is in shades of grey. In school I could only
see the blackboard from the front row if I used mini binoculars or a
monocular. I could not play sports since I could not see the ball. I
cannot drive. (Thee will be new blogs on this as of 2013 I was told I was a candidate to drive with bioptics and now at 51 have a license) I have to have a large monitor, enlarge the font and sit
very close to my computer. I used large print books in school and still had to
hold them close to my face. I cannot read menu board at a fast food
restaurant.
I have had
some very hard times and I only discuss these as a way to get people to
understand how things they say can be so thoughtless and hurtful and I know
many other children are going the same pain. I was teased daily throughout my
school years all the way through high school. I was either teased because of my
vision or teased because people thought I was faking. When asking a teacher to
get my test large printed again he replied you need this one large printed too
as if I had a 24 hour blindness the first time. While in college studying
computer science and getting extremely good grades often the highest in the
class, I went to speak to a dean about a new degree (computational physics) and
the career options and he replied I can’t imagine a job you could do with your
vision. I constantly got people saying “You don’t need sunglasses it isn’t
sunny out” yet for me cloudy or overcast and blinding bright. I would say to a
bus drive “I am visually impaired is the #80 bus” and the reply I often got was
“It’s on the front of the bus read it”. I never understood the need for
people to make rude comments.
Some of
the hardest things I encounter are due to people not knowing or not
understanding. An example would be if someone waved or smiled at me from across
the gym I can’t see it then I hear from someone else that people think I am a
bitch and unfriendly because I do not acknowledge their gesture. I have a
very hard time recognizing people I don’t know well even up close so I am
unable to go up to people back stage and talk to them if I know them from the
forums or other shows. If I am at the gym working out with someone and I
need to find him or her I have to walk up and down every row I can’t just scan
the gym to find him or her. When I am introduced to people in a group I am not
usually close enough to see them so if they come up to me at another point I
usually don’t have any idea who they are. Due to the colorblindness I am unable
to do my own make-up since I can’t see if I mess it up. Before I got my
red contacts I used a white cane and even had a guide dog for a short time.
This was especially hard for people to understand since I had some vision. But I was borderline on getting round without it and tripping down steps or
bumping into to things. The red contacts combined with dark sunglasses
help enough that I can get around on my own only on occasion tripping or
hitting things. Simple things like approaching a building with all glass
I can't find the door without walking all along.
What are
some of the solutions so everyday issues for people who are legally blind. Some of these will have their own posts.
Software to enlarge font. Windows - ZoomText. Mac MacZoom.
Magnilink Student Pro CCTV to see the board
Monocular/mini binoculars to see
blackboards/whiteboards, menus at fast food, screens at airport, street signs
when walking, bus number
Magnifier books menus
Bus or walk. Bioptic to drive.
At school as a child all my markers
were labeled with the color
Red contact lenses. Several different color contacts.
Dark sunglasses
In my
employment I have had to find solutions. When I did computer programming I
provided my own 19-inch monitor and bought the software to enlarge font. I was
only able to accept employment on public transportation routes and that I could
get to in a reasonable amount of time. Most of my jobs my travel time was 2 hrs
each way. As a Montessori teacher I had to make sure my co-workers and
assistants knew I could not see what was happening very far from me on the
playground, my assistants handled anything that had to do with color ie making
sure all the right colored pencils were in the right color holder. I was able
to be a very effective employee with just slight modifications. The hardest
part about the disabled with employment is not difficulty performing the job
but the attitudes of employers.
I have not
let my disability stop me. I excelled academically. I have an AS degree in computer
science and am certified as a Montessori Primary Teacher. I am currently completing by BS in computer science. I took public
transportation to school and work. As a parent I tried to expose my daughter to
as much as possible even using public transportation to get to these places.
Before I met Chase and for several years after I got to the gym and trained
alone. I always tried to find a way to be as independent as possible.
I have not
let not being able to drive stop me including living in the snow. For 5 years
we lived in Buffalo Grove, Illinois during this time Chase had a job in which
he traveled often so I would train alone. There were many times during prep I
would walk back and forth to the gym 3 times in the snow in sub zero
weather. I had a goal and I was not going to let not driving stop
me. At one point during my weight loss the time the bus travel took for
my job did not allow me to make it to the gym. I lived too far away to
walk and the bus did not run early enough to go before work or late enough to
go after work so I bought enough equipment to set up a small gym in my garage.
There is always a solution.
I have had
some wonderful experiences that I never would have had if I were not legally
blind. In 1984 I was a member of the US Ski Team of the USABA (United
States Association of Blind Athletes). As part of the team I participated
in the World Games for the Disabled in Austria. Legally blind and totally blind
skiers each have a guide that yells directions as they ski. As a child I went
to summer school know as Daily Living Skills where legally blind and totally
blind children learned basic skills cooking etc and how to do it with their
limitations but we also went on several amazing field trips in order to
experience things. These trips included: helicopter flights, train to Los
Angeles, flew to Los Angeles, farms, behind the scenes at Catapillar,
behind the scenes in large bakeries like Orowheat and dairies, Disneyland,
Magic Mountain, Zoo etc. Lots of really cool stuff to a 6-9 year old kid.
“Let's
assume you have complete rod monochromatism. You would have no functioning
cones which normally provide vision in high levels of light. You would need to
use your rod receptors in all levels of lighting. However, rod cells can
function only at low levels of light. Your rod cells quickly bleach out or
saturate in bright light, leaving you in bright light without functioning
photoreceptors. The brighter the light, the faster and more severely the rods
would bleach out, and the more you would struggle to see.
At low
light levels, however, you could see to function easily, because the rods
receptors use a chemical photopigments that function best in low light.
Creating Night for
Day
Thus, to
help an achromat see better in the light, we must turn the light level into the
night so the rods can function. Night scenes in the movies are often filmed in
the daytime with dark filters used to darken the scene.
Any dark
filter will reduce the light reaching the retina and may help the achromats
begin to see better. However, not all filters are created equal. If we look at
the spectrum of light from the sun as it splits apart into a rainbow we see
that "white" light is actually made of many different (colors)
wavelengths from red on the outside to purple and blue on the inside.
Shorter
wavelengths like blue light have much higher energy than red light. The red
light has only 1/15 the energy of the blue light. Thus red light has less
energy to bleach out the rods in the eye. If we use a red filter on a complete
rod monochromat, we lessen the bleaching of the rods and allow these
individuals to maintain functioning rods to see with in bright light.” (http://www.achromatopsia.info/why-red-why-magenta/)
Much more
information can be found here (http://www.achromatopsia.info/) for those who are
interested including videos that show how people with Achomoatopsia see.
