Looking under disability
The anthropology of impairment
by Kris Castner on
Every time I walk into my local grocery store, a man whose smile never ceases to brighten my day greets me. Although a part of me knows it's his job to make me feel welcome, another part of me knows better. I happen to believe that there are some people who simply can't fake kindness, and I increasingly suspect this man is one of them.
Only one thing bothers me about our weekly interaction: I don't yet know his name. Like other Americans, knowing and using an acquaintance's name is perceived as a friendly and respectful gesture. The reason I don't know my greeter's name is because it would require that I glance down at his name tag, and I hesitate to do this because of the fact that he is confined to a wheelchair.
I know it might seem overly cautious of me, but I'm afraid the moment I fail to retain solid eye contact with my greeter friend he might mistake the glance as a public recognition of his disability. Although eye contact is a culturally charged social interaction, for me eye contact during conversation is my way of showing respect for whomever I'm speaking with.
In other countries, my preferred method of showing respect might be offensive. In yet other countries, eye contact between people of the opposite sex constitutes taboo. But in this instance, it's safe to say that eye contact is viewed as a socially polite practice.
Following my last post on disability, a fellow reader rightfully commented that no one except me is able to experience my sister's struggles and successes the way that I or my family members can. Those outside my family cannot possibly share my insider's perspective, nor can they be expected to. It's experiences like my run-ins with the man at the grocery store that my eyes are opened to the reality of this point.
Speaking honestly, I cannot help but notice this man's physical disability. My inclination is to feel empathy for him, even though the only rationalization for this comes from the fact that he is in a wheelchair and I'm not. Rather than automatically making eye contact–my personal "respect reflex" –I feel a hesitation to do so.
But why? Why doesn't the ease of my interactions with my disabled sister transfer into my interactions with other disabled individuals? Despite my desire to convey the same degree of respect in my interactions with any given person, some situations (like this one) make it more difficult for me to achieve this without thinking about.
Lately, I've been reflecting a lot about my own experiences with my sister, and now, this gentleman at the grocery store. Why is it that disabilities, or how one should or do react to them in a social setting, are seldom mentioned in day-to-day conversations?
Considering the US alone has estimated that more then 32 million of its citizens are living with a disability, I can't recall being in too many situations where the topic of disability was openly talked about. Questions as simple as, "Is it impolite to ask someone about their visible physical disability?" or as complicated as, "Is it more polite to ignore their disability completely?"
Although I would oppose a completely "singular" way to treat people with disabilities, I do think some basic education about disability and disabled people (in school and/or work places) would help eradicate much of the social stigma (or perhaps ignorance) surrounding these topics.
This inspired me to begin a quest of sorts into the discourse of disability. Being from an anthropological background, I thought it best to start there. Although I wouldn't say there is a complete absence of literature about disability, the theme is certainly not in danger of being exhausted by social scientists any time soon.
My journey launched with the work of Joan Ablon. Credited by many in the field as a herald of the anthropology of impairment, Ablon was first interested in social stigma that she recognized during her work with relocated American Indians. Initially, her work focused upon the social impacts of chronic alcoholism as well as its effects upon community and family.
It wasn't until she started speaking to individuals with genetic conditions that her niche in disability discussions began to unfold. Unlike the popular emphasis of "cause and cure" that prevailed around the time Ablon was writing, she instead portrayed how people (particularly those disabled since birth) defined "hope" in a way that was much different than "cure." As she put it,
"my interests center on how persons with stigmatized health conditions cope with the daily insults which endanger their personal identity and self-image, their social life, and their economic opportunities. What individual and social patterns have emerged to provide short and long-term psychological and social survival." (Ablon 1992:10)
I was most impressed with the way her work was able to bypass ethical debates of disability and instead center on the people "under" the disability. Ablon wanted to learn how people living with a marginalized or uncommon condition went about constructing their lives and forming their families. In a way, she was more a biographer than a scientist in her approach.
Another aspect of her work that I appreciated was her commitment to making it useful to the people she studied. Her work was not written for fellow anthropologists as much as it was for the communities of those she spoke with during her fieldwork. She was a supporter of action anthropology in that she saw a need for "helping as well as learning." (Ablon 1994:195). Ultimately, she aimed to assist the communities she studied to achieve their own goals–she was merely a cog in the wheel of progressing disability discussions.
Further evidence of this desire was her early support for the development of the academic study of disability. She played a pivotal role in the growth of University of California's San Francisco medical anthropology program as well as its curriculum. She has also served as the most senior (and nondisabled) member of the Disability Interest Group since its beginning more than 30 years ago. Her work beckons others to contribute to the ethnography of disabled people's experiences across cultures.
Ablon's work has helped to expose how the lack of a valued societal characteristic (such as an ability to walk) can result in an individual's stigmatization and lowered self-esteem. Ablon was able to voice this while mastering the art of writing "about" but not "for" disabled people. If anything, she leant her time and her voice to disabled communities so that their conversations might be more loudly heard.
After reading Ablon's work, I began wondering what advice she might have for me with respect to the man at the grocery store. It didn't take me long to become rather embarrassed by the obvious answer…I merely need to ask this man for his name!
I have come to realize my well-intentioned efforts not to notice my friend's disability has been keeping me from truly connecting with him all along. Trying not to focus on his disability has simultaneously kept me from focusing on this man as a fellow person. I think Ablon would agree that there is nothing "bad" in and of itself of being aware of someone's disability. And I believe that much of the general population would benefit from more public discussions of disability.
But unless we acknowledge a difference, move on from it, and dig deeper, we will never fully get to know the person past what we can gather about them on the outside. Although we are human and sometimes become overly aware of people who display some difference from us, we should come to realize that feeling comfortable to ask questions is a first step to a conversation.
The way I choose to show respect (eye contact, name exchanges) are culturally relevant to me in the US, but I would be interested to know of how my story might change in the context of a country outside of the US.
I would also welcome any feedback about how the topic of disability in general is approached by other cultures and societies around the world.
My interests center on how persons with stigmatized health conditions cope with the daily insults which endanger their personal identity and self-image, their social life, and their economic opportunities.