Well if you have stumbled onto this site your in for a treat, this blog is dedicated to the sociological experiment in which we put ourselves in the shoes of an individual with Fibrodysplasia Ossificans Progressiva, a rare bone disease that causes abnormal bone growth all over the body, yikes. But before I delve an deeper It's only formal I introduce myself. My name is Jackson Ciofu, and I am a Sophomore at Michigan State University majoring in History, Philosophy, and Sociology of Science (quite the mouthful). Instead of reiterating what my fellow researchers have already said, I will attempt to explain our reasoning and procedures in much less scientific terms, as our differing backgrounds is one of our many strengths.
When it comes to diseases portrayal in the media and in the minds of the general populous. There is a certain sympathy that people often express when confronted with those who are genetically unfortunate,when it comes to physical disabilities, by no fault of their own. While this type of compassion justified by those who claim to have it. Empathy or the ability to feel what someone else is feeling is also tossed around with the deeper and truer understanding or is often throw around as if having the same purport, when this is clearly not the case. Combined with the medicalization of many new illnesses turning them into statistics as opposed to people we launch our endeavor with the intent to bring back some of the humanity and weight, to those that suffer from these diseases. By subjugating ourselves to the same impediments as those with FOP, we hope to come one step closer to true empathy, and in the process demonstrate to ourselves, and those reading, that a disease such as FOP is much more than a list of symptoms and genetic destiny. It is a unique human experience that must be lived, to be understood.
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