TRAINS, APPS & SEEING-EYE DOGS

WORKING AROUND MOBILITY CHALLENGES WITH THE RIGHT ATTITUDE AND TOOLS

AN EP MAGAZINE INTERVIEW

EP Magazine recently had a lively, informative and upbeat conversation with Christina Llanes Mabalot, a frequent editorial contributor to this publication, motivational speaker, educator, and advocate for the special needs community. Christina, who is based in South Carolina, is completely blind from aniridia. When she was younger, she could still discern figures from afar, but the health of her eyes would deteriorate through the years. Along the way, she's purposely and fearlessly faced new situations to arm herself for similar ones in the future. It's all about learning, and attitude, and it's been quite a ride.

Christina has always insisted on being independent and living her life to the fullest. She earned her Master's in Education, specializing in Early Intervention for the Blind. She received Educational Leadership training through the Hilton-Perkins International Program in Massachusetts, then worked as consultant for programs for the VI Helen Keller International. She has championed Inclusive Education, Early Intervention, Capability Building and Disability Sensitivity programs.

In our interview, Christina revealed some of her interesting experiences as a person who is blind. She also shared several tips and sage advice regarding mobility for others who are blind or visually impaired.

EP Magazine: You have aniridia as do your three siblings and daughter. When you were younger you were visually impaired, but later in life, you became completely blind. Please describe your mobility challenges during your youth, when you were in grade school and high school.

Christina Llanes Mabalot: Doctors declared me and my siblings to be legally blind. The doctors were even surprised that we could see at all because of our unique eye anatomy. Like my siblings, I was extremely near-sighted. In general, I could perceive big objects and structures from a relatively farther distance. Smaller objects and details were difficult to see, unless I stood next to them or brought my face close. Lighting, and whether the setting was outdoors or indoors, affected my perception. Mostly, it was easier to navigate in the daytime, or with the right amount and quality of light. When outdoors, the intense sunlight blurred my vision. People with aniridia are advised to protect their eyes from the sun's glare. Doctors advised us to wear shades with ultraviolet protection, but I hated wearing them because they "shaded" my vision. Squinting my eyes was my best defense from the sun. I could not read road signs unless the letters were huge, or I was next to them. I often slipped on the floor before I could read the warning signs for "wet floor" or "wet paint". When taking public transportation (in Metro Manila, in the Philippines), I had to wait for the vehicle to stop and ask drivers or passengers about their destination till I found the right vehicle. I would do a roll call to eventually find my ride.

It was more challenging to navigate poorly lit, unfamiliar areas. I would stumble or bump into furniture and fixtures, and sometimes run into walls. This was especially true when objects were painted with dark colors, or when their color blended with the area's overall color. Climbing steps was easier for me than going down. My depth perception was very limited. I remember falling down stairs or steps when walking and engaged in conversation, or when not focused on navigation. Poor visual recognition of people was another issue.

HELP AROUND THE HOUSE: Christina Llanes Mabalot uses multiple tech tools in her home including Amazon's Alexa, which controls lights, thermostat, vacuum cleaner, Ring doorbell and the security system while providing notifications and online shopping.

EP Magazine: When things worsened, while in college, you still took public transportation. Talk about your experiences, getting around at this time of your life. Did you make sure you were always with someone else when you were out in public? Did you use a cane?

CLM: I didn't know it was time to use a cane, although my residual vision was fast deteriorating. I had to take two rides going to and from university. The first was a jeepney that took me from our house to Taft Avenue (in Manila), a major, busy highway. Sometimes, I would ask one of our domestic helpers to get me on the jeep or on the bus to get to school, but those times were rare. The Metro buses to the University of the Philippines passed by the bus stop every 15 minutes. I had little trouble identifying them by their bright blue and white color.

Travelling back home was the test for perseverance, however. It was often too dark by then, and I only had light perception. I walked to the bus stop via my mental vision. One night, I rammed my head into a lamp post and acquired a big lump at the center of my forehead, like a unicorn's horn. Forget about identifying the vehicles' colors, for the glare of headlights blinded me. Sometimes, friends helped me get a ride, but when by myself, I usually asked assistance from the other passengers at the bus stop. When there was no one around, it was time to pray because it became a hit-or-miss, lost-and-found situation for me.

I remember times when I hopped on wrong buses and ended up in unfamiliar areas. When I couldn't find assistance from other people, I ended up taking a cab home. When in dire straits, I'd go in an establishment for a pay phone and call my parents for help.

EP Magazine: Describe your mobility experiences around some of the busiest cities in the world, at the time you were in New York and Massachusetts to fulfill work for your Helen Keller Foundation grant during the 1990s. How did you navigate the streets or subways, for instance? How did the Helen Keller group help with resources?

CLM: Helen Keller International (HKI) provided all I needed for mobility and travel. They equipped me with Orientation and Mobility training. By then, I was finally able to use my cane efficiently. HKI also gave me vouchers for cab fares to get from one point to another. For my trainings, I was based in Watertown, Massachusetts, home of the Perkins School for the Blind. My favorite spot to visit was Harvard Square, where I'd walk around shopping, or hang around just for the adventure. I always ended up getting lost, but I'd just hop on a cab to take me back to the dormitory. Eventually, I gained friends who enjoyed window shopping, so I often rode with them. We visited tourist and scenic spots, including Salem. To report to the HQ, I'd travel from Massachusetts to New York via train. Usually, an HKI staff waited for me at the station to guide me to the office. However, there were times when I had to travel alone. It is important to note that streets in New York are logically structured, thus easy for a blind person to know exactly where to go.

The problem was the sidewalks are strewn with vendors, merchandise, animals, and God knows what! Worse, some people were mean. It was a time when society was not all that sensitive to people with special needs. "Can't they see that I'm tripping and falling with my cane to get through?" I'd often ask myself. One time, I think I toppled a man's showcase of goods as I swung my cane. The vendor was livid. I explained how I was sorry, and to understand that I can't see. I heard him walking closer to me. Threatened, I unintentionally hit him with my cane. He called the police. Thank God they were on my side.

EP Magazine: When you were in your 40's, you had to have your eyes enucleated. What was the reason for this move? Then describe the process of learning to get around all over again.

CLM: I was already totally blind when we decided to have my eyes enucleated (medical term for removing eyeballs). During that time, I was dealing with so much pain due to glaucoma, (high ocular pressure), and I had to take several medications and eyedrops to maintain a normal pressure. On top of this, my left eye bulged so badly while my right shrank. I was a perfect picture of asymmetry for kids learning the concept. Blindness, intense headaches, plus my negative self-image, these all led my husband and I to decide to have my eyes removed. Doctors advised that I should do it one eye at a time, but I refused. "If I were to go under the knife, it would be only one time… or I might change my mind for the second surgery," I reasoned.

The time I had to relearn navigating was when Orienting someone born blind is more challenging only because that person needs to understand his environment. Sometimes words can't paint a picture of something which has never been perceived. I realized I lost my vision. I remembered having residual light perception, which somewhat helped me in navigating. Over a period of time, I found myself bumping into objects, even in my own home, because I was following what I thought to be light.

My thinking was, there should be daylight from windows or from lamps, so I moved accordingly. But my calculations turned out wrong. Curious, I asked my husband one day, "Should I turn off the light?" My husband replied, "Are you joking? The lights are off because it's bedtime." There was a perennial glare in my sight which I thought to be light, like in the old days. Little did I realize that I had completely lost vision. What remained was either phantom vision or something else. Peers who are blind see either pitch black or cloudy white or, in weird cases, a combination of both. With the perennial glare, I had to get used to not mistaking that for lights, and then move without relying on any light perception.

EP Magazine: Would you say it's easier for someone who was born blind to learn to navigate public spaces — or someone who started out with residual vision, then became completely blind later in life? Please elaborate.

CLM: From experiences in the blind community, it's mostly easier for people born with residual vision to learn orientation and mobility. They already possess some kind of visual concept of the environment they're in. So, even if they eventually lost their vision, the adjustment would not be too difficult, in terms of skills. The real issue to contend with is really depression… grieving the loss of vision, which is usually a tougher battle for those who were sighted and lost their vision. I'm currently coaching a pastor in his 60's who is suffering from macular degeneration. He was diagnosed with the condition when he suddenly became blind in one eye. Earlier, he had tunnel vision, which was still some form of residual vision, which helped him navigate. Then he lost that remaining vision too. He's mostly grieving loss of the ability to drive. On a good day, it's easy to coach him navigation skills because he possessed a mental picture of his environment. He's continued to preach since he's committed most verses to memory. However, more are the days when he can't be engaged because of depression. He's been rushed to the emergency room a few times due to anxiety attacks. Orienting someone born blind is more challenging only because that person needs to understand his environment. Sometimes words can't paint a picture of something which has never been perceived.

EP Magazine: What advice can you give to someone who will be going through what you've gone through — where you started in life as someone with some vision, then went on to become completely blind? What should they prepare themselves for in terms of learning to get around and be as independent as possible, in navigating both the home as well as the world outside?

CLM: Attitude is everything. Regardless of what happens, a positive outlook always saves the day. It's healthy to grieve any loss, including vision, but to grieve all your life is as bad as death itself. Once one has accepted blindness and decides a career making use of one's talents and abilities, the next step is to set up how to pursue it, including travel. Weigh options for getting to work. If working remotely isn't an option, but one really wants to pursue a certain career, then sign up for trainings…or consider owning a guide dog. It's not easy, but maintain the desire to be independent so one won't be discouraged to learn. A person who is blind can't always depend on others for help and support. There may come a time for one to have to travel alone. Enjoy the support, but also learn how do travel on your own. It doesn't hurt to be prepared for the worst. I have a co-worker who's totally blind. His parents always took him to and from work. One day, his father became ill and his mother had to care for him. He ended up not going to work for days because he was too afraid to take an Uber.

I myself was afraid the first time I had to take public transportation to school. I was used to being driven, or taking the school bus. But, as I said, there'll always be that one time when support won't be available. So, I had to do it afraid. After the first time, I decided to train myself not to be afraid, so I consistently commuted until I got used to it. One should also possess the humility to ask for assistance when needed. It may be difficult sometimes, especially if one has had a bad experience with a mean, sighted person, but don't take it personally. Develop a thick skin. Requesting assistance may be your lifeline.

EP Magazine: What do you know of modern technology and its role in supporting people who are blind or visually impaired, in helping them navigate public spaces? Can you mention specific tech tools that will make it easier for them to be as independent as possible? Which of these tech tools are you using in the house? When you're outside the home?

CLM: In the house: Alexa — controls lights, thermostat, air frier, "Dbot" vacuum cleaner, ring doorbell, and security system. It can also provide notifications, and do anything Amazon-related, even online shopping. Having a smart phone with accessibility is a must. With the text-to-speech features, your phone can read the map, even on a walking mode, so that you know where to go. Waze — it's is like Google maps, only better. "Seeing AI" is an artificial intelligence app developed by Microsoft (for IOS) narrates the world around you. It describes what's in front of the phone camera like short text, documents, products, people, scenes, currency, light, color and currency. "Be My Eyes" is an app which contacts a volunteer for support, in real time.

EP Magazine: Your daughter, Jem, is visually impaired and thinking of starting a life and career in another country. What have you two discussed about independence and getting around in an unfamiliar environment?

CLM: I've advised her to study the map of places she's visiting, and the safest way to get there. To make sure she's figured out where she can eat, buy groceries, etc. Use all resources out there, like apps, websites connections across all platforms that will help her gain knowledge to be independent. This is why we made sure she has data connection wherever she goes. A pocket wi-fi has served her needs. Another thing, network — as it's always beneCLM: The smart phone allows most everything to be accessible. It can save the person who's blind and visually impaired to have everything at their fingertips — Uber, Door dash, Yelp, Kayak, Amazon, bank & restaurant apps, AirBnB, Delta app (because to me, Delta is the most blind-friendly). ficial to know a lot of people, so when she was abroad recently, we hooked her up with friends… Take a foldable cane (that would fit in her purse) everywhere she goes, in case she needs it… Rule #1 — I told her, don't fall in love needs it… Rule #1 — I told her, don't fall in love in a foreign country. Falling in love might take away her independence. The biggest thing was to equip her to be online. When you get lonely, call Mama. When I asked her, she said I've always nagged her to be independent, so she didn't have a choice.

EP Magazine: What is the role of the smart phone in helping blind individuals navigate the world outside the home? What specific apps are useful to you?

CLM: The smart phone allows most everything to be accessible. It can save the person who's blind and visually impaired to have everything at their fingertips — Uber, Door dash, Yelp, Kayak, Amazon, bank & restaurant apps, AirBnB, Delta app (because to me, Delta is the most blind-friendly).

EP Magazine: Despite being blind, aside from earning a living, you are a homemaker; you cook, do the laundry, walk your dog. It seems that nothing gets in your way to lead an independent life. Can you share your philosophy with other individuals who are blind?

CLM: It's all about making choices. I chose to get married and have a family. Thus, I determined to do what a wife, mother, and homemaker needs to do, except drive of course. Let me share the choice of the same co-worker who is blind. He chose to be single so he doesn't have to be burdened with serving a family. As a matter of fact, he didn't want any promotion because he didn't want the extra burden of relearning a different role, despite the pay raise. Whenever I discuss with him the issues I've been having, he always retorts, "That's exactly why I chose to remain where I'm at." Once you choose a role or position, as they say, you gotta do what you gotta do. If you can't do things despite trainings, or due to system limitations, you also need to accept that as weaknesses. Accept that having some weaknesses doesn't mean failure. It just means you need to focus on things you can do, and then excel in them. •