During our class discussion on Friday, the benefits and drawbacks to Lauren’s hyper-empathy syndrome were brought into consideration, along with the fact that it is the world she operates within that consequently constructs her as ‘disabled’– as a result of an individual facet of her being that is both integral to who she is and just one of many things that makes her who she is. This ableist viewpoint contributes to the ‘other-ing’ we discussed, that often occurs when we deny a being the ability to be read as “human” as well as “healthy”, quickly moving us into a discussion centered on our society’s perspective towards visual impairment– specifically in regards to those that need glasses in order to see.
As a society, most of us do not equate “having to wear glasses” with “having a disability”, but to those that depend on them, this could nonetheless by rendered an extreme disability depending on the time era, location, and/or society that that individual resides within. This weekend as I was reading “Octavia Butler’s Disabled Futures” by Megan Obourn, she discusses the binary framework that is at work in disability politics and offers profound insight into Butler’s Xenogenesis Trilogy in regards to issues raised in the area of disability discourse. On page 126 she states that the Xenogenesis Trilogy “foregrounds adaptability, as opposed to the assimilation or xenophobia, as a way of choosing life and as a necessity for living. Adaptability is,” she claims, “required of everyone in order to mitigate the potentially violent effects of ideologies of health and wellness that reproduce restrictive understandings of ability/ disability, human/other, and future/past” (Obourn 126).
In allowing ourselves as a people and society to move beyond the traditional reductionist understandings of disability, we open up the possibility to enable ourselves to take on, not just one, but a multiplicity of perspectives as they pertain to human difference as well as the societal foundations that shape such problematic reductionist discourses in regards to people with disabilities, or anyone for that matter that differs from the ‘status quo’ that culture has ascribed to that particular person or group of people. In examining the cultural implications of labeling, stereotyping, and stigmatizing others that may or may not display differences from that of our own, we are better able to understand the reasons for, and the ways in which society tends to equate “disability” with a “devalued” life experience and/or mode of existence.
On somewhat of a finalizing note I also wanted to bring in a ted talk given by Alice Dreger, a bioethicist who considers herself a person that “defends people with unusual bodies,” and aims to work against the medical model of disability as it pertains to the people she works with and represents. Beginning at 4:38 in the video, she claims that, “the reason that children with these kinds of bodies –whether it’s dwarfism, or it’s conjoined twinning, or it’s an intersex type — are often normalized by surgeons is not because it actually leaves them better off in terms of physical health. In many cases, people are actually perfectly healthy. The reason they’re often subject to various kinds of surgeries is because they threaten our social categories.” This can be seen to link with the portion of Obourn’s article when she discusses the two female constructs in Adulthood Rites that are brought into a community of resisters who are unable to have human children of their own. One of the female constructs, Shkaht, is unable to see with what our human conception of sight conceives as inextricably linked with eyes, however, while Shkaht may technically “have” them, she cannot and does not use them for eyes, but instead uses her tentacles as her primary sensory organs in order to see. She goes on to talk about how several of the resisters actually want to and attempt to remove their tentacles as an attempt to “fix” what about them the resisters constitute as ‘un-human’ and desire to go about removing some of that “alien-ness” by intervening medically on their behalf. However different these two constructs appear, the fact of the matter is is that they need and depend on their tentacles for sight but that they nonetheless attempt to ‘look at’ or turn towards people with their eyes because “humans associate expected bodily behavior and sense-organ use with humanity” and, as a result, “the constructs learn to mimic human sight in the same way that many visually impaired people do” (Obourn 121).
Another example is when Lilith is impregnated by Nikanj without her consent and is told that she will soon give birth to a half-Oankali, half-human baby. Her first perception of the fetus she is carrying inside her is that of a “thing” or “monster” because it won’t be 100% human. While all women should be given the freedom and choice to decide whether or not they want to keep/terminate their pregnancies–which, as we saw, was a possibility that was completely and utterly denied to Lilith– it also makes me take a step back and wonder if babies born with say, Down-Syndrome, or any other type of disability, will be a group of people who will someday, because of reproductive technology and screening procedures prior to birth, be obsolete from society. And to think about the very real possibility of eliminating certain body types based on societal perceptions is in many ways akin to the past events of history wherein many groups of people were almost wiped out of existence because of their ethnicity and/or race. I think for such a possibility in our world to someday occur, would in many ways for us be a great loss, both for the community who is denied the ability to live on and exist as a whole as well as each unique individual who is denied the opportunity to be seen as an individual that is just as complex as ourselves and who, in many cases, experience the same if not a greater quality of life than many others do. The majority of the students I currently work with, for example, have Down-Syndrome but society often teaches us to view this group of people in a negative or sympathetic “oh-I-feel-so-bad-for-them” light, when really they are just like any other happy kid (if anything they are the happiest and sweetest students I have ever had the opportunity to teach). And I guess I grapple with and have quite a lot of difficulty imagining my life without them in it or, a future and a world that discludes them as a people within it and existing among us.
Like Dreger’s Ted Talk demonstrates, when our social categories and constructions are threatened or challenged we respond by attempting to “fix” or “cure” something solely out of the distorted belief that those that do not conform to our expectations of what it means to be human or who deviate from the status quo, look-wise or action-wise, must be re-configured in such a way so as to make them as much like the social conception of “normal” as possible.
You can watch Alice Dreger’s Ted Talk here: