Water Fountain, Narrow Sidewalks, Myasthenia Syndrome? Not a Good Combo!

Ojen, here! I’d like to share a problem I was having and how I solved it. I’m the type of person that when I see, feel, or think something is inconvenient, or if I can foresee the future doing me wrong, I will speak up and change it.

I like to be heard and understood, with this I seek to be accommodated or come to a compromise. On the contrary, I never write anything, not even a complaint letter; I mean, come on, I have Sophia typing my blog here, but let it be known, I speak a lot, I talk a lot, I voice a lot, and that’s how I get shit resolved. Here’s a story about how I got my problem resolved with just my voice and persistence.

I have Muscular Dystrophy, a rare form called Congenital Myasthenia Syndrome, and I am nearing 40, and the two together take a toll on my life. According to RareDiseases.org, Congenital Myasthenia Syndrome is a disorder that has an underlying defect in the transmission of signals from nerve cells to muscles characterized by muscle weakness. This disease is terrible and a pain in the ass, well, how do I put this?! Ya know how a person goes to the gym to exercise and afterward they are tired and exhausted? Well, that’s me! But I don’t go to the gym, I simply sit in my wheelchair as a paraplegic. All I do is move my jaw and tongue to speak while I use the little muscle I have left to drive my very sensitive, compact wheelchair joystick.

Let me tell you, because of this certain muscle weakness, I find myself in disturbing, dangerous, and the most unimaginable situations, due to not being able to control my joystick. Once, I had found myself in the middle of a four-way traffic light doing circles and twirlies, while simultaneously people were getting out of their car to help me stop with my antics. Another time, I drifted off a driveway into the street, where a 16 wheeler truck was careening down Western Blvd. I couldn’t control the joystick on the driveway’s slant, because my muscles couldn’t handle it. Luckily, I didn’t hurt myself, although I have had a painful experience with my desk. My wheelchair was on tilt mode and my seat started tilting backward when my hand drifted off the controller. My legs were under the table, causing them to be crushed with excruciating pressure. I was basically lifting my entire desk with my legs, because of an unexpected and accidental tilt that has no stop. This was a horrible and painful experience!

So, being able to control my hand movement is extremely important. Every bump, every slant, or every hill, regardless of the size, my condition will cause me to become unbalanced and most often throw my hand off the controller; things can get worse when I have poor blood circulation if the weather is cold or windy. This is dangerous and happens unexpectedly: anytime, anywhere; the story of my life!

At Universal CityWalk’s water fountain pick-up/drop-off area, I dealt with many fearful visits. A super narrow sidewalk with loud splashes of water made it unbearable to either be picked up or dropped off. Access Services, a curb-to-curb, transportation service for those with disabilities or the elderly, has a different driver for each pick-up and often comes after window arrival times, meaning they can be over 45 minutes late. Between the narrow sidewalk with loud splashes and Access Services, I was exhausted from being scared of falling off the curb and getting injured. 

I had it played out in my head since I knew what I needed from the very first drop-off. 

First, the driver had to be notified to not park too close to the curb. The sidewalk was too narrow for me to exit safely with enough room, in order to drive myself off the vehicle’s ramp. Then, if I wished for assistance halfway out of the vehicle, I couldn’t receive help or I would have a “broken radio” conversation with the driver due to the thunderous splash sounds of the water fountain being terribly loud. After this process, rolling on the sidewalk to get to the ramp for Universal Studios and its CityWalk, was strenuous because as I mentioned before my condition causes me to become unbalanced and often will throw my hand off the controller; essentially lose coordination and fall off the narrow curb. Lastly, I was only going to the movie theater inside CityWalk and the drop-off location was too far from it. I would commute nearly two blocks just to get to the theater and then commute two blocks back to get to my pick-up point. 

All this wheelchair driving and tribulation would cause me to feel fatigued and scared; not to mention cold weather and the crowd coming from the Universal theme park, which was an additional negative experience at times, on top of my existing challenges caused by my weak muscle condition.

I took matters into my own hands and did something about it!

I called Access’ customer service and explained my situation in great detail. I thoroughly explained the danger I was in and how there were more suitable drop-off and pick-up locations for both parties; at a location, I already had in mind. I went on to explain the benefits Access Service would gain such as less traffic congestion and more space for the vehicle to service their customers. I pointed out that they would be liable if they did not resolve my concern to establish a second Access stand.

So they took my report and established something called “Zone Evaluation” and lo, and behold several months later, voila! There was a second Access stand at my desired and specified location, called Stand 2. I was so excited I took pictures of it and everything. ‘Til this day, I tell drivers, who drop me off, I fought to establish the second stand.

The solution was essentially voicing my concern and communicating in-depth with perseverance. As an interaction designer and an advocate for inclusivity, I took advantage of my skillset and my personal situation to address an issue. My unique position allowed me to house several concerns for both parties, for Access Services and their passengers. There are designs that either need to be created for better products or services; or these products or services need to be refined through design. I believe design never ends, as humans, we have a need to either simplify, improve, or create continuously to our liking through design. 

To make a change or an adjustment, it is essential to lay out the pros and cons of a problem and its possible solution for both parties. If there’s a will to create or fight, go for it! Justify it! Speak your mind or create what might be needed or improved. It’s amazing what can be done just by expressing a thought or a challenge for change: take a look at our history! We do it over and over, candles were created for light which improved to become electric, horse-drawn carriages to cars, black-and-white TVs became color, institutional services and bills for laws are continuously created or modified over the years, etc… This all happens only when something is not in place or needs to be better or changed. So, I wanted better; I fought for a better transportation service experience for myself and for those who might also need it.