So, there's something about the story of the young Ashley that has been on my mind all day. I can't help but keep wondering what is wrong and what is right. Before reading this story I had never heard of static encephalopathy, so I did some research. This "condition" as they so fondly refer to it as, are seen in those infants that are diagnosed with Fetal Alcohol Syndrome (FAS). If Ashley's mother had consumed alcohol when she was pregnant, what are her motives behind the surgeries for Ashley? Does she feel guilt, is she trying to keep her alive, because she feels remorse for causing her daughter to have static encephalopathy? Now, I'm not trying to point any fingers and I don't want to accuse Ashley's mother of anything if that is not the case, but it's just so sad that this little girl will never be able to lead a normal life, and it's not just because of her static encephalopathy. I know that it is extremely hard for a child with the brain development of a 3-month old to give her consent for the surgeries and it must be left in the hands of her parents and her doctors, but I can't help but wonder if they made these decisions so it would be easier for them to handle and more convenient for her parents?
Ashley's story has opened my eyes to others with disabilities. Other cases that are not as hefty as hers, but they are still viable in everyday life. People that have physical or mental disablities are not given the same chances or opportunities as people that are seen as "normal" and healthy. I see it everyday on campus, people that have physical disabilities are unable to get into buildings, the sidewalks make it hard for them to get around, there are not elevators that are available for their use. And I find this sad, sad on the universities part for not making sure that their students, and even their employees, have equal opportunities and they are able to get around campus and into buildings.
Ashley's story has allowed me to look at disabilities in different lights. I feel for that little girl and wish that there was an easier answer to all this. I wish that she would be able to have the same opportunities as everyone else. I know that that is very far fetched, but by not allowing their daughter to develop normally, I believe that Ashley's parents have in a way cheated her out of life and the little life that she was able to experience, she won't have the chance to any longer.
-P
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2 comments:
That's complete bull shit. She is unable to make decisions on her own. Her legal guardians a.k.a. her parents decided what's best for her. She would never be able to live normall, despite the procedures. She would never be able to get married, care for a child, or anything. So why not accomodate her so that she and her parents can enjoy life? Sure everyone is entitled to a normal life. But she would never have a normal life. All the rules changed when she was diagnosed with the disorder. She is permanently affected by this syndrome. I feel terribly for Ashley, but it is what is.
"Ashley...On My Mind" did a great job presenting a medical and ethical dilemma faced by people affected by medical conditions.
I am one of those people who deals with a serious medical condition every single day of my life. My brother Andrew, 16, will never speak, feed himself, bathe himself, read, write, drive a car, or do many other tasks we take for granted. He doesn't have a choice of whether or not to do these things or not; he physically and mentally cannot. Now I could go on for days about this, which I will not do because there's a good chance that I will dive deeper into his story and evoke tears from my readers. But my point is this: the disabled have the same rights as every able-bodied person. They need advocates to speak and act in their best interests; to protect them; to aid in their learning and development; to love them as they are. In my mind, the greatest sin any person can commit is any sort of offense toward a disabled person. Intolerance and ignorance run rampant through this issue, and if we are to progress as a society we need to address this issue immediately.
On a side note, the condition that my brother has is called "Angelman Syndrome." That is no coincidence. He is an angel and he is perfect. Just like every other disabled boy, girl, child, man, woman, adult is.
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