LUCY MOON

At the Same Time, Out of Time: Ashley X –– Alison Kafer

Kafer presents the Treatment that Ashley’s parents and doctors (Gunther and Diekema) prescribed for her without consent, as a potentially harmful and degrading experience for disabled bodies and lives. The Treatment has stripped away, as it strips away Ashley’s potential “pleasure” she might experience from what the mastectomy took away from her; violates her choices in the future (as who knows when her ability to interact and communicate with the world will suddenly change?); and because the Treatment argues for the flaw in privatizing Ashley’s case and treatment to a “mother knows best” logic. And honestly, the argument has its strengths. The arguments that Ashley’s parents and her doctors put out to gain supporters and potentially collect more “pillow angels” for the treatment in the near future is flawed, and is definitely skewed towards benefitting the interests of Ashley’s parents.

However, this does not mean that Kafer’s arguments are not flawed at all, and is a perfect argument against this idea of “the Treatment”. In fact, I found the arguments presented in the article quite hypocritical and offensive. Throughout the article, Ashley’s parents are criticized for dealing with the imagined future of Ashley in pain, Ashley sexualized, and Ashley imagined “grotesquely” in an adult body. This puts to question the “what if” arguments that are posed by the doctors and the parents. Instead of questioning this appropriately with logic, Kafer throws in another set of “what if’s”. What if the Treatment hasn’t improved Ashley’s quality of life? What if Ashley felt more pain getting her breasts removed than if she were to have kept them? What if Ashley’s breasts might have presented a range of potential sites and sources of pleasure? Concluding her own sets of “what if’s”, Kafer concludes that the Treatment-supportive discourses being presented as self-evident facts is wrong.

This becomes more a problem with philosophy at this point. We cannot constantly be haunted by the chances of a better outcome that might have been in the future. We cannot constantly be hopeful for a miracle to bestow upon us in the future (the miracle here being Ashley in the near future being able to suddenly to form thoughts, judgments, and interactions with the decision for the Treatment). The present is the present, and there is a need to make a swift and informed decision. It is definitely not right for Ashley’s parents to present the Treatment as fact that it has improved Ashley’s “quality” of life. However, it is even more wrong to question and condemn the informed decision-makers, who would’ve had to make this difficult decision to proceed with these medical interventions. Even if the decision might have been to not proceed with this invasive treatment, Ashley’s parents definitely would have been criticized being “too soft”, idealistic, and unintelligent in not proceeding with the Treatment.

Furthermore, Kafer criticizes the parents for assuming that familial care is the best form of care possible for Ashley’s case. Kafer argues that this is disrespecting and demonizing towards caregiving and paid attendants. She argues that privatizing Ashley’s case is a pathologizing excuse, and that you cannot just ward off everyone from debating, except for those closely involved in the case. However, I found this to be a somewhat flawed argument. I do definitely see where Kafer is coming from (there is definitely a need for debate and communication, both for the ethics committee, disabled community, and medical community), and “privatizing” Ashley’s case is not the right thing to do. However, the fact that Ashley’s parents were willing enough to present their child’s treatments and story as open to the public shows how prepared to talk about this with the public. Kafer wouldn’t have ever had the luxury of getting to learn about Ashley and her story, and for her to demonize the parents for privatizing their decision-making is hypocritical. Not every decision has to be made after consulting the entire public for a consensual, democratic decision. Of course there is a need for making a swift, “private” decision. Not every choice that the parents make need to be consulted and debated with the public. This is nowhere near disrespecting the trained caregivers of our society. Rather, it is reinforcing the role of family in making medical decisions for their child. No child, whether or not they are abled or disabled in differing severities, would want to consent to an invasive treatment that is potentially going to hurt them in the near future. But this does not mean we wait patiently around for newborn children to be “intelligent” enough to make a decision that yes, they would like to undergo bronchial thermoplasty. And if Kafer argues that this is because we “know” enough that medically, without surgery, the baby would have died, I would like to pose the same question to her: “who knows if they were going to die?”

Ashley’s parents arguments, philosophies, and “pillow angels” movement is flawed, yes. It could also be potentially harmful for the future generation of disabled children. And yes, it is right for us to find a way to argue against the parents’ logic that this is the cure-all best treatment for disabled children: turning them all into pillow angels. However, approaching this from an angle of more what if’s is never going to get us anywhere. The world is filled with what if’s. Try again, Kafer.

“Proliferating Cripistemologies: A Virtual Roundtable” –– Robert McRuer and Merri Lisa Johnson

At first, I was really confused as to what exactly this was. I felt like each and every subsection of the essay comprised of a completely different voice, talking about completely different aspects of cripistemology. They didn’t seem to work collectively as a whole, and I felt lost in all these different “I’s”, “i’s”, “us’s”, and “you’s” that each segment seemed to refer to. Some tackled cripistemology from an etymological standpoint, while others approached it in conversation with the intersectionality of identities. All in all, I never understood where each of these arguments were approached from.

However, I later recognized that it was absolutely my fault for not recognizing the essay for what it was–– a literal, virtual roundtable on the topic of cripistemology. At this point, I didn’t know how to formulate my thoughts around all these voices that had something to say about cripistemology. If I were to make a stance based on my opinions, I wanted to be read up on more than a summary-esque form of each voice on cripistemology. What the roundtable did teach me though, however, is that there are a few voices that speaks up for this and yet, there is a lack of these voices ever reaching people beyond the community involved. This reminded me of how we lack a platform where people who aren’t actively involved in the disability community have no way of getting into the system to learn about what the community has to say. I think it would be important for such roundtables to not only be limited to the professionals theorizing in the disabled community, but also open to the public in a way we can academically discuss the discourse related the the pedagogy of disability.

This also reminded me of a talk I had with my friend, after a McGill Coffee Hour chat with a guest speaker (a professor at Vanderbilt) about the importance of widespread understanding and acceptance of feminism. But instead of encouraging or empowering us, the chat with the professor made us feel even more lost, dejected, and marginalized because the only people that have shown up to the coffee hours were women or involved in the queer community. There was one male student in attendance, but instead of an attitude of acceptance and welcoming, I felt a hostile air around us towards the one male student that has come to the coffee chat. As if all the patriarchal stem directly from that one student. The student seemed so distressed. He came to learn about how he could contribute to the empowerment of feminism, but instead left dejected. I somewhat felt the same way about this roundtable. I felt like there were a lot of terminologies being thrown around that I didn’t understand or could relate to. I am not saying that educated discussions and debates are not important, but just felt like this roundtable might easily be rendered useless if the only people reading or engaging in the roundtable are those already closely involved in the discourse, and are familiar with the material.

Notes on Natural Worlds, Disabled Bodies, and a Politics of Cure — Eli Clare

Clare makes an argument about the reckless and hypocritical aspects of society’s innate desire to make a distinction between “natural and unnatural”, “normal and abnormal”. The fact that the disabled body is directly linked to a state of being unnatural, defective, abnormal, or special, he argues, is a form of condescension that aims to eradicate the abnormal bodies of society.

Up to this point, I find it very easy to agree with him. Equating a person with words denoting objects in need of disposal is never the right way to address anyone. However, I found his later arguments to somewhat counter, and elevate one group of disabled individuals over the other. Here, I am talking about people who, later in life, form disabilities. I personally fall under this “category” of disability, and I found Clare’s arguments themselves to be patronizing. I felt as though as if Clare was just haphazardly just mentioning the fact that oh yes, he recognizes that disability does not just limit itself to what you are born with, but then go on to shift focus onto congenital disabilities.

For one, all the examples he gives, fishing for support, are of congenital disabilities, ranging from Type I diabetes, facial birthmarks, all the way to himself as an example. There is nothing innately wrong with writing about one’s own personal experiences, as this is what is driving me to find his argument to be skeptical, but also because sharing our experiences with others is a form of social growth that I actively find encouraging. However, the fact that his writing on the topic of “restoration” of disabled bodies, and how unnecessary this is, seems to essentially erase out the identities of those who have grown into their disability.

Clare seems to denote the desire for “restoration” and “respect for abnormal bodies” as two things that can never coexist together. The desire to restore a body to its “original” state (if there is one) is only because the society does not respect its abilitative state, and thus wants to restore it to its “natural” ecosystemic state. But I honestly don’t think it’s safe for Clare to make these broad assumptions and arguments that restoration is disrespectful. This might hinder individuals from actually seeking the help they need for their body to not be in complete, abysmal pain.

It seems as though humans have a tendency towards a desire to revert back into a prior state, as a form of nostalgia and retrograding. That’s why so many people theorize about the womb, desires, and general nostalgia. So, although I hate to use the word “normal”, feel like it is generally a “normal” tendency for people who later on in life conceive disabilities, to desire some form of restoration, both for “bodily comfort” (Clare 246) and because they have witnessed what they reflect now on, as an easier way of life for themselves personally. Calling a desire for bodily restoration as “not the answer” (255) and a mechanism to enable “social control” (255) seems like it’s kicking out this group of disabled individuals out of both the “normal” social group and the “disabled” social group.

“The Institution Yet to Come”: Analyzing Incarceration Through a Disability Lens –– Liat Ben-Moshe

It was easy to agree with many of Ben-Moshe’s arguments, especially since I am also not a huge fan of the incarceration politics in the United States. I do believe that there is a need to drastically reduce what constitutes an “incarcerable crime”, and felt like the arguments deftly stated all of this in a firm manner.

However, I could not help but wonder if the ones at fault for the mass incarceration of people with disabilities is not entirely the fault of the “criminal (in)justice system”, but rather, because of society’s anxiety towards disabled individuals. For one, maybe it’s the fact that nondisabled people are ‘afraid’ of the unconventional behaviors of disabled people, as we are trained as a society to never deviate far from the norm (as evident by our standards of beauty, education, etc.). Also, maybe it’s the fact that the care facilities we have set up for the disabled are not enough. Like how a small difference in the educational system can drastically alter a student’s future, I feel like a small difference in the quality and quantity of care facilities can drastically change the outcomes of incarcerations.

Although Ben-Moshe suggests institutionalization as an alternative to the wide variety of enclosement in settings such as prisons, jails, and detention centers, I think it would be better to go even further back in rendering a safe environment for disabled people. Perhaps the problems with incarceration have less to do with even keeping people in detained settings, but rather because we are not working cooperatively as a society to provide equal opportunities to prove oneself.

Incarceration is a scary and often unjust form of ‘punishment’ within a justice system that is geared towards dis-privileging the underprivileged, the poor, and the disabled of our society. It is fundamentally flawed on purpose to befittingly benefit the lawmakers that have created the system. So it is without doubt that it is a hard potion to swallow for many, that their criminal offenses have been made in regard to these flawed laws. However, changing the system is difficult, but changing the society together may be a better solution to resolving issues of mass incarceration of the disabled.