Nostreculsus Writes

This letter was in the comments thread. I thought it worth emphasis:

Unlike Mr Wright, who is at home in the world of abstract thought, I am so constituted that I must rely on examples. And his article reveals an example that rivals “The Picture of Dorian Grey” for imaginative horror.

There are two women. They both are involved in modern medical care. The first is named Francesca Minerva. She is a medical ethicist, pursuing postdoctoral studies in philosophy. Medical ethics is a growing field, as governments assume control of medical decision-making. Even her critics admit that Francesca looks nice and has a nice smile.

The other woman involved in medical care is Amie Osborn. Amie is a physician in Houston, treating children. Amie also has a nice smile, but Amie herself admits she does not look “normal”. But let me quote Amie’s blog.

In most every way, I am your typical, garden-variety human being. I’m married with two cats. I am a physician…

I have Treacher Collins syndrome. Treacher Collins syndrome is a genetic, craniofacial birth defect that is characterized by a range of distinctive facial anomalies. The main characteristics of TCS are downward slanting eyes, small lower jaw, and malformed or missing ears. These anomalies can cause hearing, breathing, and eating problems.

Treacher Collins syndrome is a lot more than a pile of statistics and facts. It is about the person below the surface. People tend to give wide berth to the things and people that they perceive as a threat to them – those people who are “different” or who they don’t understand. In some situations, this defense mechanism can be good. In excess, however, it breeds ignorance and heartache and leads society to shun those that aren’t “normal.” Thus, society does not take the time to see what lies beneath the outer shell of a person and never sees that below the surface these “different” people are just as “normal” as anyone else. It is part of my goal as a doctor-in-training to educate people about Treacher Collins syndrome and to prove to them that looks can be very deceiving. I hope to start a new trend in society where society reads the book before discarding it because the cover looks a little odd.

Ah, you say, two women working in the field of medicine. Amie is quite odd looking on the outside, but seems quite nice. And Francesca looks nice in all the externals, but, inside, something is…not quite right. Because Francesca, the ethics expert, wants to kill Amie. Or rather, she wants someone else to have killed Amie as a child. But, let’s quote Francesca’s own words.

A serious philosophical problem arises when the same conditions that would have justified abortion become known after birth…One example is the case of Treacher-Collins syndrome (TCS)…Usually those affected by TCS are not mentally impaired and they are therefore fully aware of their condition, of being different from other people and of all the problems their pathology entails. Many parents would choose to have an abortion if they find out, through genetic prenatal testing, that their fetus is affected by TCS.

Well that seems quite definitive. Amie, how ever do you cope with the painful awareness that you can never look as nice as nice Francesca? What say you?

Given the chance to live my life over again without Treacher Collins, I would have to politely decline. I believe that the experiences in my life as a result of Treacher Collins have molded me into the person that I am today. Like anyone else, I’ve had many ups and downs, and to give up the lessons I’ve learned on the roller-coaster ride of life would be to give up part of myself. Having Treacher Collins syndrome, or any other medical condition, does not make someone “abnormal,” it only makes him human.

Please read and support my work on Patreon!