Distraction Free Reading

On The Social Life of TBI

A Traumatic Brain Injury (TBI) is a common injury that occurs when a physical blow or force to the head damages the brain inside the skull—full stop.

As such, TBI is a natural part of life in a world in which it is possible (and easy) to hit one’s head. It is often fatal, one of the leading “causes of death and disability” in the US (CDC 2015). This straightforward conception is codified in biomedical publication and practice, enshrined in the federal TBI Act of 1996 and national disability policy, and has even made brief appearances in popular film and public debate about the health risks of contact sports. This bio-political consensus is thus clear and plain: “TBI” indicates a singular event and its direct and natural bodily consequences.[1]

Photo of a male neurologist and a female nurse looking at neurodiagnostic brain scans. The nurse has a stethoscope hanging down from her neck and a folder with documents in her hands. The doctor is pointing at a particular brain image, drawing the nurse's attention to it. 

Neurologist and nurse analyzing neurodiagnostic images of a patient’s brain (CDC 2015: 54)

This fundamental definition is not wrong. Seventeen years ago, I survived my own severe TBI when I was struck by a speeding tourist bus while crossing the street. When I regained full consciousness a month and a half later, I was confused, unable to walk, and had difficulty speaking when I wanted. Biomedicine and neuroscience had a reliable explanation for each of these symptoms: physical brain damage caused my disorientation, ataxia, aphasia, and numerous other sequelae. Some of these resolved on their own, while rehabilitation taught me to mask or get around sequelae that did not. I was discharged from the hospital three months later, spent the next year “recovering” at my parent’s house in Seattle, and ultimately returned to my pre-injury academic goals, a poster child for the biomedical rehabilitation of TBI survivors.

At least, that is the story my doctors told.

Photo of a father (on the left) and a son (on the right) standing by a metallic railing. It is a bright sunny day, with no cloud in the sky. Behind the railing, there are green trees and Seattle's cityscape. The son is wearing sunglasses, a green T-shirt, and dark trousers, with a grey hoody wrapped around his waist. The father is wearing a dark top and light trousers. The father is supporting his son from the back, the son is holding the railing with his left hand. Beside them is a walker.

The author re-learning to walk at age 23 with help from his father.

I know from my own experience that TBI in the world is far more complicated. My recovery was never complete. Nor is it ever only about me. Even today I consciously hide my cognitive and speech impairments from others, trip and fall without someone to grab on to, or forget what I am saying mid-sentence and have to ask others what I was saying. There is more than just my own head injury at play.

Hoping to explore and flesh out this realization, I conducted ethnographic fieldwork in Seattle, WA, with a diverse collection of survivors, those closest to them, and the medical professionals that help them recover.[2] In my dissertation for the University of Arizona is build on this fieldwork, “The Social Life of TBI,” I examine my subject as a social object (Mead 1932). TBI is continually constructed and re-constructed by each of these various actors. In my informants’ interactions and constructions, the acronym’s elegant biomedical-political simplicity fades away, revealing a much more complex reality. Simply, TBI’s effects on survivors’ bodies and minds, the TBI that exists outside of biomedicine’s watchful gaze is never as straightforward as the TBI that biomedical practitioners treat. It comes into play in survivors’ relationships with those closest to them, who I call “significant others” (SOs), those such as romantic partners, family members, roommates, or anyone with whom survivors interact regularly and on whom they depend in their daily lives. SOs were integral players in both my and my survivor-informants’ lives, magnifying our successes and problems.

As such, we can perhaps better understand TBI in concert with Disability Studies (DS) scholar Tobin Siebers’ (2008) theory of “complex embodiment.” Siebers expands the standard DS “social model” of disability, wherein those with certain bodily conditions are effectively made disabled when they encounter those who refuse to accommodate them (Phillips 2011). For Siebers, however, the disabled body is still a central player in this process, as illustrated through his own experiences boarding airplanes (Siebers 2004). As a survivor of childhood polio, Siebers needed time and assistance when boarding a plane to find his row, stow his carry-on, and get seated. If in his wheelchair, he would be allowed to board early and take his time, no questions asked. If on foot, however, Siebers could and had been refused permission to board early, causing him anxiety and possible injury in the hurried commotion of general boarding. His embodied reality as a polio survivor only became disabling when others refused to accommodate it. That refusal led him to use his wheelchair in the future, which in turn affected others’ conception and accommodation of his condition. Siebers’ body alone did not cause his disability; the feedback loop between his bodily condition and others’ treatments of that condition did.

TBI survivors have distinct and particular bodily capacities and needs following their injuries, much like Siebers, post-polio. These are not always disabling, but they are changes in bodily function that require accommodation from those upon whom survivors depend. Without the right help from SOs at the right times, these changes can exacerbate survivors’ many sequelae, influencing others’ conceptions and treatments of survivors’ bodily capacities and reinforcing the disability of TBI.

For example, after surviving a severe TBI in 2006, my survivor-informant Frank has had problems with what he calls “little things” in the years after his head injury. These are ordinary matters like taking his medications, buying groceries, and keeping his house clean. They take the form of:

…these miscellaneous things that other people kept dismissing like it was no big deal. Like, I had no memory of my kids after my brain injury. That’s a big deal: two kids, I don’t remember either one of them. So I was having to learn about my children again, you know, my whole life again. And then I have to deal with all this little crap on the side.

Managing the “little things” kept Frank from attending to the “big deals” in his life. After several years of trying to handle them both himself, return to work, and keep his family together, Frank’s wife divorced him and took custody of their children.

That’s when things turned around. Frank moved in with his mother, who reminds him to turn off the stove, gives him rides when he is too fatigued to drive, and takes care of a host of other incidentals. Frank then devoted himself to regaining custody of his youngest son, finding new relationships, and restarting his career.

Another of my survivor-informants, June, had been struck by a car several years earlier. As June was a single mother before her injury, her daughter had to serve as her caregiver while still in grade school. That changed when June married, allowing June’s daughter to successfully graduate and move out. After this, June finally became more active in the community. But her husband, who had been “used to having a wife who lay in bed all day,” took issue with this and became abusive. When they divorced a short while later, he destroyed much of her property and left with the rest.

Still unable to hold a job, June spent the next four years couch surfing at friends’ homes, sleeping in homeless shelters, and finally living for 2.5 years in an abandoned storage unit with her cat. During this time, she lost contact with everyone save her doctors and her out-of-state family, depending on public shelters for food and hygiene. While June’s TBI certainly did not cause her homelessness—that had much more to do with her abusive ex-husband—it did lead her to becoming dependent on him and unable to manage her impairments without his assistance. Fortunately, with the help of other survivors in Seattle, June was able to find increasingly scarce public housing in the city. Today, she still lives with only her cats but is developing a new life as an artist and has developed a large network of survivors as her SOs.

For June, Frank, my other survivor-informants, and I, TBI not only indexes our injuries and impairments, as the bio-political consensus holds. It comes also from the social interactions we have after our injuries, as SOs hamper or help us in our daily lives. In this sense, TBI is never not our original head injuries, but it is always also the other factors in our lives that are forever altered by our bodily conditions. It is also always also the interactions that we have with others. TBI is thus both the federally-recognized disability that results from a physical head injury and the socially-created disability brought about through survivors’ social lives.

Footnotes

[1] I use “bio-politics” in a way that is related to but distinct from Foucauldian biopolitics (e.g. Foucault 2008). I discuss this relationship further in my dissertation, but here I only imply the combined biomedical and political equation of TBI and head injury as bio-political.

[2] This research was conducted with a Doctoral Dissertation Research Improvement Grant from the US National Science Foundation.


References

Centers for Disease Control and Prevention (CDC) (2015). Report to Congress on Traumatic Brain Injury in the United States: Epidemiology and Rehabilitation. Atlanta: National Center for Injury Prevention and Control, Division of Unintentional Injury Prevention.

Foucault, Michel (2008). The Birth of Biopolitics: Lectures at the College de France 1978-1979, translated by Graham Burchell. New York: Palgrave MacMillan.

Mead, George Herbert (1932). Mind, Self & Society from the Standpoint of a Social Behaviorist. Chicago: University of Chicago Press.

Phillips, Sarah (2011). Disability and Mobile Citizenship in Postsocialist Ukraine. Bloomington: Indiana University Press.

Siebers, Tobin (2004) Disability as Masquerade. Literature and Medicine 23(1): 1-22.

— (2008) Disability Theory. Ann Arbor: University of Michigan Press.

 

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