A Mobility Journey: From Bumpy Roads to Smoother Sailing
Authors: Kathi Garza, Early Childhood Specialist, VI Outreach Program, Texas School for the Blind and Visually Impaired (TSBVI)
Keywords: Orientation and Mobility, albinism, Certified Orientation and Mobility Specialist, self-advocacy, empowerment, independence, cane travel, paratransit
Of the many things I spent time focusing on or worrying about as a teenager with albinism, independent travel was not one of them. I grew up in a very small town with parents, siblings, or friends to ride around with, and I assumed that I’d just move to a big city after college where there was great public transportation, because all big cities have that, right? I didn’t qualify for O&M services, and even if I had, I probably would have balked at the idea of being pulled out of class for “needing extra help.” Over the years, I attended college in a medium sized city, moved to another state and back, and have settled into life in a large city with my young child. Although I perceive my journey to independent travel to be quite long and full of missteps, figuratively and literally, I have learned so much about myself, shifted my perspectives on many things, and continue to develop the advocacy I need to access support. These lessons have intertwined themselves into my current perception of life with albinism (a genetic condition resulting in reduced acuities and light sensitivity), the method by which I approach new challenges, and my work in the field of visual impairments.
One of the things I realized more recently is how dynamic mobility needs can be. I always perceived mobility to be defined as simply going from one place to another. I never gave much thought to how the process might vary depending on the circumstances, environmental conditions, or even my own experiences and level of training. When I began college, my strategy for crossing streets was to look both ways and hope for the best. I couldn’t read a crosswalk sign, knew nothing about parallel traffic, and definitely didn’t understand how dangerous turning right on red might be for a pedestrian who isn’t looking behind them. At the time, it didn’t seem to impact me very much because I rarely traveled off-campus, but as my situation changed, so did my needs. I moved out of state knowing very little about public transportation, despite the fact that I’d be relying on it going forward. Many years later, my needs changed again when I faced becoming a single mom to a young toddler without reliable transportation.
The ability to shift my perspective has been paramount throughout this journey. One of the biggest shifts I’ve made has been to reflect on the idea of independence. From my perspective, true independence was the only option, but I have come to realize that very few people actually live completely independently. We all rely on technology, coworkers, spouses or partners to exist in the day-to-day world. What I strive for now is a level of independence that feels comfortable to me. There will always be times when I need the support of someone or something else, and I’ve determined that if I allow myself to accept that, it helps me feel empowered in the situation rather than discouraged from trying to live up to an unrealistic ideal. However, it’s totally a work in progress!
Throughout my adult years, I shifted my perspective on the stigma of carrying a cane with low vision. In school, I accepted very little support from professionals in the field of visual impairments. I spent a lot of time “passing” as someone who could see well, and I believe I can in most situations. However, working in different settings, I began to notice that people didn’t understand my visual struggles because I wore glasses, which are supposed to “fix” visual issues. Everyone assumed I could see well, and this was fantastic for someone who spent their entire life trying to prove just that, but not so great when it involved safe travel in the community. It occurred to me that it would be much safer for me to travel in the community if people understood that I was blind rather than that I could see, especially during times when the sun impacted my ability to function in new environments. Carrying a cane also helped people understand why I might appear to be leering when I was just squinting to see, or why I might ask for help in the airport, especially during the heightened awareness that we experienced immediately after 9/11. The idea of carrying a cane that might label me as “blind” was one that I struggled with, but in the end, this little detour led to feelings of empowerment rather than defeat because I continue to maintain control over when it’s most helpful to use this tool.
The most recent lesson I’ve learned focuses on self-advocacy. In my work as a Teacher of Students with Visual Impairments (TSVI), self-advocacy has always been an important word and a concept that I’ve spent lots of time talking about with students. I don’t think I really understood the depth of this concept because I’d always believed self-advocacy to simply refer to the ability to ask for help when it’s needed. It wasn’t until I had my own experiences with paratransit that I came to realize the true scope of self-advocacy.
When I became a single parent, I lost the transportation I had relied on for the last several years. With a young child in daycare, I panicked about having to be responsible for mobility on my own. By this time, I was using a cane and had experience with public transportation, but I struggled with the logistics of transporting both of us to and from daycare and then to my work with all of our items for the day, including his stroller. It took an hour and a half to travel 6 miles between work and home with a daycare stop in between. In the morning, my son was asleep when we left home, making negotiating items difficult. In the afternoon, the sun was often so bright that I arrived home with migraine headaches.
Although I never thought that I would need paratransit, a shared-ride system for people with disabilities, I began to explore this door-to-door service as a viable option. Qualifying for paratransit was quite challenging for me. The required mobility assessment happened in a rather sterile environment compared to where I was expected to travel each day, and I was told that traveling with a young child could not be considered as a factor. I qualified with conditional eligibility, but shortly afterwards, I began losing routes because they didn’t meet my eligibility condition of containing a “complex intersection.” I soon discovered that the agency did not have a definition for this term, making it completely subjective. After a lengthy process, I ended up in an appeal hearing, justifying my needs based on the intricacies of my visual functioning as related to travel in different environments and at different times of day. Ultimately my eligibility conditions were expanded, and I was able to resume using the service which has allowed me to focus my attention on spending time with my son rather than simply getting us where we need to go safely.
This experience taught me that there’s more to self-advocacy than asking for help when you need it. Self-advocacy requires that the person knows themself, what they need, and how to get it. I’ve found it important to be able to explain why I believed I needed the service and to be able to explain my vision well enough to target how it impacts mobility. Even though paratransit systems support a variety of disabilities, in my experience, there was a lack of knowledge about the needs of someone with low vision compared to someone who is totally blind. This led to the assumption that my needs were not as significant because I “have more vision.”
Through my mobility journey, I’ve learned that my needs are very dynamic and will probably continue to be. As my son gets older, more activities and social engagements will arise, creating more opportunities to meet the demands of navigating transportation. I’ve learned that my perspectives about my own needs and the tools available are always changing. I must weigh each decision or challenge against how it impacts my son and me. As important as self-advocacy is for me, I’ve learned that there is a village of helpful humans who tend to appear when you least expect them to, and sometimes, when you need them the most.
The initial publication of this article was in the Winter 2020 edition of Albinism Insight, a national quarterly publication of the National Organization for Albinism and Hypopigmentation (NOAH). Kathi’s companion article, “Reflecting on White Cane Day,” is in the Spring 2022 issue of TX SenseAbilities.