By: Megan Borella
Those without disabilities are often extremely curious about the lives we disabled people lead on a day to day basis. How we access a world that is generally not tailored to our specific, individual needs tends to fascinate people who have not encountered someone with a disability before. Over the years, I have come to notice that certain questions are asked of me again and again, often by complete strangers. While I sometimes feel the context in which I am approached with these questions is not the most appropriate, I understand and appreciate people's natural curiosity, and want to do my best to enlighten those around me. So here are the best answers I can come up with for the following common inquiries:
1. Were you born blind?
Yes. I was born with a hereditary retinal disease called Lebers Congenital Amaurosis. Even after twenty-one years of eye doctor appointments, I still don't quite understand what that actually means, particularly when it comes to more in depth, medical definitions; but in short, the rods and cones in my retina are effected. Specifics vary from person to person, but common characteristics include involuntary eye movement and extreme sensitivity to light due to how the pupils react to it. Lebers consists of at least 13 different types, defined by their genetic cause, patterns of vision loss, and related eye abnormalities, which makes tailored diagnoses for each individual patient more difficult without performing in depth tests. This particular eye disorder tends to remain stable, but can gradually worsen over time; my vision has remained the same since I was around five, so it is unlikely that there will be any further deterioration for me.
2. Can you see anything?
Another form of this question I'm often asked is "What is it like to be blind?" My usual response to this is "What is it like to be able to see?" While this isn't an actual answer, and is meant to be taken as a joke, my point is that since I have never had sight, I have no real, meaningful comparison to reference to help people understand what I see every day. When you have never known anything else, giving a clear, accurate description of vision is surprisingly challenging. I am able to perceive light, and along with that comes the ability to detect the indistinct shadows and outlines of what's around me. How far I can see in any given direction is very inconsistent, and depends on a variety of factors, such as color, whether I'm in a place that's light or dark, or if I'm inside or outdoors. For me, contrast is huge, meaning I will easily be able to detect something white on a black background, but more muted colors in a less bright environment create difficulties. When I was in early elementary school, yellow was my favorite color simply because it was the easiest for me to see due to its brightness. The amount I can see always decreases when it is dark or cloudy, which can affect my orientation when I'm traveling independently.
3. How do you know where you're going and how to get around?
My ability to travel independently always amazes the majority of people I know. One of my best friends just chalks it up to magic, which always makes me laugh. My own brother cannot fathom how I get to and from class, even after I explained it to him step by step and he looked at a map of UCLA. Unfortunately, I do not have superhuman, extrasensory perception. I use a cane to navigate around, and worked with an orientation and mobility instructor starting in pre-school all the way through my high school graduation. They were trained in how to teach me to properly use my cane with a variety of different techniques, maintain a straight line of travel, cross streets safely, and survive on public transportation. Due to their many lessons, I learned how to get around efficiently and ask for help when needed from passing strangers. Some particularly adept blind travelers are able to use echolocation to navigate, but I have enough sight to where that skill is not very useful for me, although I have some very rudimentary knowledge of it.
4. How do you use a computer or a phone?
Technology has advanced by leaps and bounds since I was born, greatly improving the lives of all of us who are blind. Apple in particular has always been very cognisant of accommodating its blind consumers, building in text to speech software in all of its devices and therefore somewhat reducing how much we must spend to gain access to assistive technology. That is why I began using a Mac, and why the majority of the visually impaired have iPhones. My first few laptops, however, were PC's running Windows, and with those devices I had to purchase a separate screen reader I would then install. While on the whole PC's running this screen reader are slightly more accessible, acquiring a computer with a screen reader already built in is quite advantageous. A screen reader is a program that does exactly what the name implies: it reads whatever text is on the screen of a laptop, phone, or tablet out loud in order for those without sight to be able to use the device. This is how I read and answer texts, phone calls, and emails, browse the Internet and social media, and take notes in class and complete academic and work-related assignments. I can even play some video games, although almost all of them rely completely on text and audio.
5. How does Braille work?
An entire series of articles could be based on this topic alone, but here are the basics. In its infancy, Braille was originally meant to be a tactile military code called night writing developed by Charles Barbier after Napoleon ordered that soldiers be able to communicate silently at night. Once the code proved too difficult for the soldiers to use effectively, Barbier brought his idea to the Royal Institute for the Blind in Paris in 1821, where a student named Louis Braille refined it into what it is today. He decreased the original 12-dot code to fit into just a six-dot cell, and assigned different combinations of the dots to represent letters rather than sounds, as had been the case in Barbier's version. His modifications developed into a tactile alphabet for the blind originally written with a slate and stylus. Now, Braille typewriters or electronic notetakers are used, although I was trained in how to operate a slate and stylus in elementary school; while somewhat cool, the device is laborious, time-consuming and it is easy to make mistakes. Due to technology, the use of such a tool is now thankfully obsolete. Braille was not a widely accepted system during Louis Braille's life, but after his death, its use became much more widespread. Today, a younger generation of the blind argue that Braille is no longer as relevant due to technological advancements, but to me, this is absurd. Braille signage is still common throughout most buildings, outside of public bathrooms, and in elevators, and being completely familiar and comfortable with it is essential to the success of anyone with a visual impairment. The system became advanced enough to include a shorthand version, as well as different codes specifically designed to write music, math, and chemistry notations. It is an invaluable resource that allowed those without vision to start to become much more integrated into mainstream society.
Originally Posted: 17 September 2019