"Some people's discovery of choices that they find liberating will force others to confront choices that they would rather not have recognized in the first place; this chaining of possibilities seems inevitable. But Mueller should be aware that her choices affect other Little Peoples' ability to choose, and she should take responsibility for how she frames the choices that do affect others."
I have to really wonder if this statement is coming from a place of compassion, or if it is in fact a sort of intellectual bullying. Some facets of Socratic bioethics seem like a totally worthwhile arena; question your choices, have a long period of deliberation over life altering events, think about what is influencing your decision, what motives / cultural pressures - think about the questions that don't have clearly right or wrong answers.
The mother of this disabled person loved for 'who she was'
even though she was disabled - and this is the language that is being attacked by Arther Frank as effectively inconsiderate of the larger context that Mueller exists within. He argues that one significant facet of "Socratic bioethics" is consideration of the effect your decisions have on others, and that this Mueller girl's awful
ignorance was damaging to the community of "Little People". Except he has no reason to believe that Mueller wasn't accurately characterising her situation, in that she is expressing how her mother had to make repeated specific sacrifices in accomodating her particular disability, which I imagine all disabled adults who were once disabled children can relate to.
I would like to ask Mr. Frank - what better way to shut up a dialogue than to criticise people for expressing themselves and therefore expressing the reality of their cultural or emotional biases - and who is he to say that he has enough access to the culture of the disabled to determine that this girl has done them harm merely by saying how she feels (are "Little People", for example, as incapable of making a careful decision as another group he mentions, young children?) - and furthermore, what if she and others with her disability read this article which clearly juxtaposes her with a (paraphrased) 'morally aware girl that understands the complexity of surgical shaping' (28)
If we are obsessing over our social impact, what has he done in writing this article then, to the culture of people who are just plain HAPPY that they got the surgery done and don't feel the need to display "Emily's scars"? Who would rather not consider a physical emblem of disability as central to their "identity" as he repeatedly claims? Why does he insist on framing this issue as one of "normal"
versus "disabled" - is that not a sort of contradiction, him imposing a restrictive, perhaps not well thought out enough social categorization on all the
others? - and he also more than just implies that if you are physically disabled at any point in your life, you are forever one of the 'disabled' (and of course, this is super meaningful - you must represent
your culture, Mueller.)
He wants us to think less individualistically, to accept a moral responsibility as communal actors - less "neo-liberal"
. But he is instating that Mueller is socially bound in responsibility to a group of people that she superficially belongs to - ie, all people who share her disability - and that therefore the question of identity is answered
for Meuller,
by Frank.
Those are
your people. Mueller was expressing in her statement her social responsibility and relation to her mother - who is an important facet of her community, perhaps more so than a nebulous group of individuals whose only claim to similar identity is a similar medical diagnosis (?!)
But one could easily argue that the story of Mueller is no less useful than that of Emily's to the decision making process of other "Little People". And Frank offers no real reason for us to believe otherwise, other than his bias about how an
individual should express herself. If a person chooses to change because they think this will make them more acceptable within society -- isn't that actually a very communal way of thinking? Basically,
I will change instead of expecting
everything else to change for me - instead of expecting a fragmentation, ie my disabled people versus all of the not disabled people or the differently disabled people - I will find a way to accomodate myself. And what is the alternative - how can society more carefully accomodate Little People - by building a Little City where the Litte People can live? By building separate entrances, ramps, etc - by actually forcing more fragmentation between groups...?
I posit that surgery actually
is a way that "society" has developed in order to accomodate people with disabilities. And, it is clearly a choice whether or not to get this surgery, and seemingly pretty unfair and nonsensical to say that every person who gets this surgery most take partial responsibility for the decision making process of every other person who might get the surgery - we are not a hive mind, no matter how interconnected we are.
It is not up to Frank to decide what 'communities' everyone belongs to - and in fact, in order for communities to be extremely obvious and for thinking to be less individualistic, I actually think we would need to live in a more totalitarian system, perhaps a Frank-ocracy. Someone has to maintain the divisions between groups so that every person knows who they are particularly responsible to - as soon as you are responsible to
everyone or even just responsible to
whomever you choose, as soon as your interconnectedness becomes so overwhelming and bizarre and you're constantly considering the impact each thing you do will have on disparate factions - how would you ever act? Mueller would have had to have made a statement that was hundreds of thousands of pages long, to ensure that she was carefully articulating the controversy in such a way as to adress the needs of her entire community (Seeing as I, and everyone else, had access to this via the internet.). Someone is bound to have some inflection of a negative reaction to your actions - but one action can ellicit a myriad of unforseeable reactions. The reality of interconnectedness is also a reality of your own lack of control, the fact that while you
will impact others, you by no means should be arrogant enough to presume that you can carefully orchestrate that effect, and in fact here is a place where hindsight is 20/20, but foresight is nearly blind.
"...But Mueller should be aware that her choices affect other Little Peoples' ability to choose.."
This just isn't true. Mueller may have been one conduit for conveying a medical possibility - but
she is not responsible for conferring the
ability to choose - The fact that we live in a permissive society, the fact that we have a succesful medical industry, the fact that we have open avenues of communication, etc - this is
why the choice is available. If Mueller didn't show the world what was possible, Emily would have - and regardless of how she expressed it, the choice would be the same, and still infinitely complex, and still voiced through multiple available channels (innernet innernet innernet!)
I agree generally with the merits of Socratic bioethics - but I don't think we need to bully the Muellers out there, or deify the Emilys. I also don't think we need to enforce or swindle or manipulate the world into enacting Socratic bioethics- I think they are extant, and operational, and I think that this is made true merely by the fact that we have this huge, interconnected (though simultaneously fragmented) internet community - where everyone is allowed to express an important facet of the controversy, thus ensuring that, through individualism and freedom to express beliefs, each issue can be infinitely dimensional and articulated, and people can feel 'safe' saying something controversial in a public forum (Case in point: all of us.)
*edit : safe as in you don't get "kicked out" for saying it. Especially if you make use of another facet of teh innernet : Anonymity.
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