Tuesday, September 15, 2015

Where do I belong? Not sighted (enough) and not blind (enough)




ZoomText DocReader (left) Mac Zoom of pdf (right)
ZoomText DocReader (left) Mac Zoom of pdf (right)
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
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
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
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".

2 comments:

  1. Honestly, as frustrating as it is to have to explain yourself time and again and be the tool of education, I can say from my experience with you this summer that your willingness and openness on the subject helped me realize there were impediments in life I hadn't even begun to consider. I grew up with family who were on the autism spectrum with learning and behavioral issues, so understanding one person's struggles do not match another was an easy concept, but the actual WAYS your issues are emphatically different from those who are fully blind or those who were fully sighted was a lesson I am glad you were willing to teach me.

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