Social scientists are often asked to think about relationality and reflexivity when they design research, two similar ideas having to do with identity and lived experience. The idea is that we bring some baggage to our research which affects our perception of what we’re studying. This baggage includes our life experiences, biases, assumptions, how we relate to our research participants, and how our participants perceive us as researchers and respond to our questions.
Whenever I explain my research or advocacy to someone for the first time, inevitably and eventually, the question comes out, “How did you become interested in this topic?” It may be a common question for other researchers, but I suspect that I am asked every single time because of my appearance. Even though I was diagnosed with relapsing-remitting Multiple Sclerosis at age 25, nothing about my outward appearance suggests that I have a progressive and often debilitating chronic disease. I have been taking disease-modifying drugs for nearly 12 years, and my day-to-day symptoms are invisible; fatigue, depression, muscle spasticity, and occasional muscle weakness. When I have more serious symptoms (a relapse or exacerbation), I tend to retreat from the world to rest and monitor the progression of my symptoms. If necessary, I’ll visit my neurologist for a high dose of steroids to interrupt the inflammation around a lesion in my brain that is causing the symptoms. My initial exacerbation and subsequent relapses have resulted in sensory and motor “weirdness” for lack of a better word. I’ve lost sensation on my arms or legs, or one entire side of my body. It’s not the feeling of my limbs being asleep, but more like a topical anesthetic has deadened my nerve endings. Once, one hand lost the ability to grasp or type or had a constant and unexplainable ache. Another time, I had “drop foot” syndrome where I couldn’t quite pick up one of my legs so I felt like I would trip over myself if I walked too far or too fast. These exacerbations lasted anywhere from a few weeks to a couple of months, but don’t happen to me very often. Every MS case is different, and my case is progressing pretty slowly right now, which feels like a privilege.
I benefit from many privileges, including having access to good health insurance which covers the astronomical costs of my medications. I’m white and not subject to racialized medical disparities that might have delayed my diagnosis or altered the course of my subsequent care. I am privileged to have a partner who has supported me through my graduate education, allowing me to contribute financially what I am able to, and helping me keep my stress in check. I am privileged to have had normal (for me) physical functioning for 98% of the past 15 years. I am not excluded from places I want to go simply because I can’t climb stairs or get over one lousy step. I am never gawked at or approached by strangers who want to pray for my healing or help me even if I don’t need the help. No one complains when I board a bus or demands to know “what’s wrong with you?” While I have become immersed in disability studies in the past 7 years, I know I can never fully understand what it’s like to be disabled and I usually don’t identify myself as someone with a disability unless I am asked. This is always accompanied with a caveat about how I’m not disabled “most of the time” even though I have just adapted to my regular symptoms.
Ironically, being diagnosed with MS and experiencing the symptoms were not what got me interested in this topic. I started graduate school with the intention of studying environmental stressors in transportation and how commute stress spills over into work and home environments. In one of my early classes, we had a visit from Simi Linton, an author on disability and identity and an expert on disability and the arts. Simi was a plaintiff at the time in a lawsuit against the NYC Taxi and Limousine Commission for increasing the number of wheelchair accessible taxis in NYC. “I can tell you ALL about environmental stressors,” she said with a smirk after we all introduced ourselves and our interests. Even though the inaccessibility of public transit had been nagging me since a temporary injury the previous year, I hadn’t completely connected the dots as a potential area for research. However, once I started down this path, I realized how slow it can be to make change in the world. As I started noticing just how inaccessible public spaces and public transportation are, these issues became a source of worry and frustration. MS is an unpredictable disease and it’s impossible to know how well I will function in 10, 20, or 30 years. Interviews with people with physical disabilities about their work, home, and transportation environments confirmed the need for more research on this topic. Despite the fact that inaccessibility permeates all areas of life—especially in New York City, where buildings were often built long before the Americans with Disabilities Act—when the conversation turned to transportation, it was hard to ignore the level of anxiety and frustration associated with just getting from point A to point B.
As I have become more involved in advocating for better transportation accessibility in the past few years, I am constantly confronted with the idea of relationality. I have had a theory for a long time that the MTA’s stubbornness in making progress installing more elevators throughout the subway had to do with reluctance to serve what they perceive to be the small percent of the population who uses wheelchairs, and if they realized how many of their passengers needed elevators, they may see things differently. This universal design/”curb-cut effect” approach spurred an idea for our advocacy campaign, “Elevators are for Everyone,” which has been somewhat successful in building public and political support for investing in accessibility improvements. But, many wheelchair users I have spoken to don’t like the message. Current demand for elevators in the subway far outweighs the capacity and people who use wheelchairs have no other option, where many others could take the stairs if necessary. While they recognize that others need elevators too, they don’t like it when people who don’t appear to need a lift board the elevator first, or the fact that elevators break down more often with greater use. From my perspective, these types of behaviors add to the complexity of the issue and highlight a need for better maintenance, bigger elevators where possible, and more elevators everywhere. I also know I don’t depend on that access every day, or even very often. I’m not the one stuck waiting while the elevator takes everyone else up and slowly makes its way back to me. I’m not the one worrying if it will come back down at all. Maybe in 10, 20, or 30 years I will be, but I’m still doing my best to listen and understand other perspectives. I wholeheartedly believe in elevating the experiences of those perspectives, which is why I am centering disability in my research.
At present, I’m beyond being overwhelmed by my life & transportation. Although I barely use the AAR pilot, I barely use Curb. The new rules seem to be significantly in violation of fed law. The cost factor $15 and 16 trips will make interesting lawsuits.
Off to Albany today. Thank fully we’ve moved back to Albany from Schnectady cutting the 45 min layover in Albany & shorter cab drive.
But before that I have a Conference up on Audubon Ave. Since there is no east/west transit in Wash Hgts, I have wheel up a minor mountain across from Overlook to Audubon. My option is to take a Bway bus to 168 to go north on the M3. It’s a toss up. I don’t have the energy to do anything except wheel up the hill.