By: William Scheopner
I wrote this auto-ethnographic essay as a part of an English Composition course in Fall 2019.
According to Adams, Ellis and Jones in The International Encyclopedia of Communication Research Methods, “Autoethnography is a research method that uses personal experience (“auto”) to describe and interpret (“graphy”) cultural texts, experiences, beliefs, and practices (“ethno”).” With this definition in mind, the following is my autoethnographic exploration into the world of medical diagnoses and disability.
I sat in the cold infusion center surrounded by pediatric cancer patients and children with other medical conditions receiving treatment. An IV pumped pamidronate into my body. I wondered, “Why am I here?” “Who am I?” and “What does this mean for me?” I had always been average, nondescript—the very definition of what our society deems normal. In this time of soul-searching, I realized that I was a part of the gray area between two interest groups—people who look “normal,” and people who have physical limitations because of disabilities or medical conditions. Our society’s ignorance and perception of disabilities make life difficult for people with medical conditions which causes detachment and isolation for people who don’t neatly fit into the boxes “able” or “disabled.”
At the time of my diagnosis, I was an active 13-year-old boy: I played flag football, climbed trees, and enjoyed roughhousing with friends. Those activities eventually led to my Osteogenesis Imperfecta (OI) diagnosis. OI is a rare bone condition that affects the production of collagen, a building block for bones and other tissue. This means that my bones fracture more easily than “normal” peoples’ bones. A couple months before the infusions started, I sat in the clinic room with my parents as we waited for the geneticist to come in, thinking back over my medical history. I had broken countless fingers and toes over the years, but I thought that was “normal,” given my choice of physical activities. I had avoided the types of typical long bone fractures (femur, humerus, and tibia) that often occur in OI patients, until the summer before my diagnosis when a routine game had shone some light on the possible presence of OI. I was running with friends through our yard and driveway, when I ran into a parked car’s side mirror and broke my collarbone. Most people wouldn’t break a bone in such an incident, but it wasn’t entirely outside the realm of possibility. Officially, my diagnosis is OI Type X. OI has a number of different types and presentations ranging from very severe to very mild. Type X is one that geneticists are still figuring out. Some of the symptoms and characteristics typical of other categories of OI, such as short stature, or bowed limbs simply aren’t present. As a result, you probably wouldn’t know that I have OI unless I told you.
As I sat in the infusion center receiving bone-strengthening treatment, I was surrounded by other kids who many people would define as “different.” I began to question what this diagnosis meant to me. You see, I didn’t look different, but I knew I was different. My bones broke more easily than my friends’ did, but not with the same regularity or severity of other kids living with OI. I had a foot in either camp, but I wasn’t truly a part of either group of people—the people our society deemed “normal” or the people who are “normal” OIers. Thinking back to this moment now, I know that I experienced the standards of what our culture terms as normal or different. I had come to find a sense of safety in being “normal,” maintaining a feeling of comfort in being nondescript. Suddenly, I found this sense of normalcy in conflict with who doctors said I was.
Since that moment in the infusion center, I have struggled to reconcile the way I felt with what doctors said. Since my OI is difficult to see from the surface, I’m not usually picked out of a crowd as someone with a medical condition like OI. Additionally, since I look “normal,” it can be difficult to truly fit into the OI community.
My sister, who’s just a few years younger than me, was diagnosed with OI at a young age, so my family has made friends across the country who deal with OI. Growing up, I became close friends with “OI kids,” but I always hung out with them as an outsider, the sibling of child with OI. So how was I to reconcile these two worlds when I was diagnosed? I felt like an alien—an outsider—in both worlds.
This experience gives me two different perspectives. I can see the world as someone who has no obvious physical limitations, someone who our society would most likely deem as “normal.” I can also see the world through the eyes of the OI community, a community that often uses mobility aids and has physical differences. I can see these two perspectives, knowing that just a slight change in my genes could have put me fully in either category.
To abruptly join the OI community as one of “them” felt disingenuous, since my condition was so mild, especially when compared to other OI kids. I felt shame in claiming OI as part of who I was, simply because it didn’t significantly impact my day-to-day activities or prevent me from doing many of the things I—and they— wanted to participate in. I always had a perception that they felt that my OI wasn’t “real”—I didn’t have mobility aids, my growth wasn’t impacted, and I fit into crowds well. But it also felt wrong to completely reject OI as part of my identity. If I was to go on with my life, never acknowledging that I had OI, I would be living in a lie, covered by a façade. It was always awkward for me to tell others about my OI because they never assumed that I had a condition that they, if they’d even heard of it at all, imagined to be a severely debilitating condition. The perception I assumed people would have of my condition caused me to detach from my communities which made me isolated from relationships. I was stuck between two communities. I was uncomfortable in the gray area, and I began to feel alienated.
Finally, I was scared that if I said the words, “I have OI,” and explained to people what that meant that I would be thought of or treated differently. I, like most people, was scared of the rejection of others. Most of all, I was scared that my friends—on my football team, at school, in my speech and debate club—would somehow see me as less. This fear is a direct result of the stigma that our culture has placed around health issues and disabilities. Unfortunately, there can be a sense of shame when it comes to talking about and owning our own health challenges. I certainly felt this as I struggled with my identity in light of my diagnosis at age 13. While I still am not quick to share about my OI, I have accepted it as a part of my story.
My youngest sister’s journey has helped me to accept my story and see that my struggle is one that many people with similar conditions can relate to. My youngest sister, E, also has OI, and her OI is more severe by comparison. When we adopted her and brought her home from China, we knew that Omaha was the perfect place for her to receive the treatment her OI required. E’s story has helped me to discover my own voice. Similar to how Rosemary Garland-Thomson articulated in “Becoming Disabled,” I know my condition hasn’t changed, but I’ve learned to think about it in a new way. (Garland-Thomson 61)
Since E has been home, I have received training from the Department of Health and Human Services, and now work with E as a respite caregiver. In my time with her, I’ve seen first-hand how people treat those with disabilities. I’ve seen the staring eyes and responded to the misguided questions. I’ve watched people park in the accessible parking and justify it by saying, “I’ll just be a minute,” or “There are other parking spaces.” I’ve watched people avoid eye contact with her because she looks different. While I can only speak from my experience as a caregiver, from conversations with others in the OI community, these thoughtless actions are far reaching across our society. These perceptions make even daily activities difficult for people who live with disability. The way that we treat those with disabilities, seen and unseen, matters more than I can emphasize.
My community, my OI friends, and my sister face challenges because of the attitudes and perceptions of disability that are ingrained in our society. As I considered and visited colleges, I considered how it would be for E to travel around the campus. And although all the colleges I visited were technically in compliance with the Americans With Disabilities Act, there was a stark difference between compliant schools and inclusive schools. One of the things that confirmed that UNO was the right place for me was when I came with my family to walk around the campus, and E was able to move herself around.
There are other places in society where we can see the disconnect between the talk of supporting those with disabilities, and the reality of how people with disabilities are actually treated. I was disturbed to hear how ADA compliance issues are handled. If a building is not compliant with the ADA, and someone reports it, the building owners only need to provide the state with a project proposal of how they intend to rectify the problem. Unfortunately, that’s the end of the process. There isn’t a timeline that the company is held to. There is no real accountability to make sure that the problem is resolved. Universal access is critical if we want to be an inclusive society, but that’s far from the end of the story. It all starts with the attitude of how we think about disabilities. We need to graduate from tacking on accessibility ramps and start to truly design things with all people in mind, not just those who our culture considers “normal.” When we make a concerted effort to include people with medical conditions, we can help to fight the isolation and alienation that I battled early in my diagnosis. Spending time caring for E hasn’t shown me only the negatives of our society’s treatment of those with disabilities, but also the positives.
Last fall, E was attending a function at our church and in community with children her own age. Those other children didn’t see someone to whom something unfortunate had happened. They didn’t have pity on her or patronize her. They saw a friend. They saw a playmate. This childlike innocence is a beautiful thing, and it’s something that would make the world so much easier for people with all types of disabilities, mental health challenges, and medical issues. OI runs in my family, and it’s not so hard for me to imagine how much different my life could look if my genes were a little bit different. Over time, I’ve come to see that my condition, while inconvenient, has given me a unique perspective into the interactions between those our society deems “normal” and those with medical conditions. My condition allows for me to see both camps first-hand and gives me the eyes to see how our society’s treatment of those with medical conditions can either give hope for future progress, or make life challenging, difficult, and even impossible for people living with disability.
Let’s start by thinking critically about how we perceive medical conditions, and in more than just lip service, act in ways that promote inclusion rather than alienation.
Bibliography:
Adams, Tony E., et al. “Autoethnography.” The International Encyclopedia of Communication Research Methods, Aug. 2017, pp. 1–11, DOI: 10.1002/9781118901731.iecrm0011.
Garland-Thomson, Rosemary. “Becoming Disabled.” From The Heartland: Critical Reading and Writing at UNO, Maggie Christensen and Tammie M. Kennedy, 3rd Edition, Fountainhead Press, 2017, 58-62.
A Profitable Read 