Some things may shock you
I was diagnosed with optic nerve gliomas at the age of three. I have maybe four or five small benign growths in my optic nerve center that stunted the growth of the nerves to my eyes. I have been monitored for many years to make sure they do not grow or change. By the grace of God alone, they have remained stable. This has affected my life greatly both good and bad.
The bad is that I am legally blind, I have internal temperature regulation issues, and migraines. I have to be careful about not overheating or getting too cold. After living almost 40 years in this body, I’m getting used to the rhythm, but it does change every now and again.
Other bad things are that I cannot drive, finding professional work is a challenge, and I’m constantly faced with misinformation or misconceptions from those who meet me. I adore questions so I am always open to hearing what people want to know. I’ve heard almost everything from “Can you see my face” to much cruder questions that I often reply with my sharp wit.
Getting around unfamiliar areas are always a challenge, but I manage. I am not shy on asking directions or using Google Maps to locate where I am. My memory is pretty good so over time I can remember landmarks or the way the subway is laid out. There are always ways of being independent.
As an artist, there are times especially in figure drawing that I’m grateful I cannot see the contortions of the model. You may think this is bad, but for me, I’m very thankful. I have been given many opportunities to be a voice to those who don’t know where to begin. I’ve been asked to conferences, as a panelist, and soon going to Washington DC to speak about blindness issues.
In many ways, I am breaking barriers for other people who are legally blind. I’ve had to change school policies in order to get a fair education and worked around other policies that did more harm than good. It may be something as small as talking to the manager of a theater saying that blind people need to sit in the front row in order to see. One time I even got loud saying “They better not confiscate my cane, I need it to see!”
I have had a cane in one form or another since I was first diagnosed, but did not begin to use it until I was in my 30’s. A cane is a very visible sign that I have limited vision and depending on where I am, can be a target for attackers. Some places in this world are more open to this symbol of freedom. There were times when I lived in Vermont that crossing the street with my cane meant nothing to drivers. In Massachusetts, drivers are more aware of this cane and stop.
A colleague once said that if a driver hits you, your college loans get paid off! The insurance here is very steep and having my cane may not protect me, but it gives me grounds to sue. Welcome to Massachusetts where taxes and insurance are still high.
In college, I hated my cane and felt vulnerable with it. I finally changed my tune when walking to work having to cross a busy intersection. This cane tells drivers to “STOP” whenever I walk which was twice a day at least. The more I walk around my neighborhood with my cane, the more folks keep an eye out for me. Since I have taken years of self-defense, my confidence has raised. I am aware I am still a target, however a cane saves my life each time I cross the street.
Side note: It also gets me into events and museums for free or little cost. Plus, most times people will come to me asking if I need help. Be careful and don’t be afraid to ask for identification.
Oh boy oh boy the questions. Again, I adore them, but they make me smile. Ready?
- How many fingers am I holding up?
- Can you see that car?
- Did you dress yourself this morning?
- Do you know you have pink hair?
- Who ties your shoes?
- In the city, how can you possible get around? (Hello, Uber!)
- Do you read?
- So I have this cousin in Tennessee who is blind, maybe you know him?
Intentions vs questions
Over the years, I bless those who ask me questions. Many times it is just curiosity. I’ve met people who genuinely have never met a person who is legally blind and it is so new to them. Questions are our way of learning and understanding. Yes, there have been questions that are pretty stupid, but they were not meant to be. I am as open and honest as I can be and have told some folks that yes that is truly stupid but thank you for asking.
Limits are what we put on ourselves
There are a few things I cannot do being legally blind. So many people get up each day and think over and over and over about what they cannot do, what society tells them is not possible, and worse still, what their family and friends say they need to put a limit on. Having a disability or not does not limit these negative voices. Being disabled just puts another layer of “Can’ts” or “Won’ts”.
For the 2016 Para Olympics in Rio de Janeiro, there was an anthem created called “Yes, I can!” featuring some of well know athletes and artists who are disabled (my invitation must have been lost in the mail). The statement was that we can do anything we set our minds to. For me, I have broken barriers in school systems, created businesses, am a professional artist/writer, international traveler, mentor, and so much more.
Some of these limitation that others put upon me I feel the need to overcome just to prove a point. In this tense atmosphere of politics, being an advocate has become more important. Silent voices rarely insight change. I do understand that being verbal about discrimination can be bad, but being quiet is even worse.
I encourage you to not be afraid to ask questions. If you would like to know more about being legally blind, send me a message and I will respond as soon as I can.
So can I do anything even being legally blind? Yes, I can!