“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing. – Quoted from Amelia’s website.
The social worker decides to join the conversation. “Well, you know a transplant is not forever. She will need another one in twelve years. And then what? And do you have any idea of the medications she will need to take to keep her healthy?”
I speak through gritted together. “YES, I HAVE DONE ALL MY RESEARCH.”
She smirks a little. “Well, what happens when she is thirty and neither of you are around to take care of her. What happens to her then? Who will make sure she takes her medications then?”
In a voice that mimics hers, I snort, “Well, what happens if you die tomorrow? Who will take care of your children? Your responsibilities at work?” She breathes in and her eyes widens. “Right!” I throw at her. “Neither of us can predict the future and we shouldn’t try. But if Amelia does not have this transplant she has no future!”
The doctor interrupts. He puts his hands up and tries to take a stern voice with me. “These medications she has to take after the transplant, they are very dangerous. They can cause seizures. We have to get the dose exact. They may cause brain damage.”
“DO OTHER CHIILDREN WHO HAVE A TRANSPLANT TAKE THIS MEDICATION?”
“Yes, but it is different for her. She is already brain damaged and mentally retarded.”
He pauses as if he is choosing his words carefully. “I have been warned about you. About how involved you and your family are with Amelia.”
The devil himself could not have produced a more evil laugh. “Ha! Warned! That is funny! You have no idea…”
I am beginning to realize I want this over with so I can move onto the next person who will help me with the transplant. So I say the words and ask the questions I have been avoiding.
“So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is MENTALLY RETARDED!”
“Yes. This is hard for me, you know.”
My eyes burn through his soul as if I could set him on fire right there. “Ok, so now what? This is not acceptable to me. Who do I talk to next?”
“I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and we will vote.”
“And then who do I see?”
“Well, you can then take it the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won’t be done here.”
They both get up and leave the room.
“If passed, this legislation will harm the free and open Internet and bring about new tools for censorship of international websites inside the United States,” the Wikimedia foundation said.
The Stop Online Piracy Act in the U.S. House of Representatives and the Protect Intellectual Property Act under consideration in the Senate are designed to crack down on sales of pirated U.S. products overseas.
Supporters include the film and music industry, which often sees its products sold illegally. They say the legislation is needed to protect intellectual property and jobs.
Critics say the legislation could hurt the technology industry and infringe on free-speech rights. Among their concerns are provisions that would weaken cyber-security for companies and hinder domain access rights.
The most controversial provision is in the House bill, which would have enabled federal authorities to “blacklist” sites that are alleged to distribute pirated content. That would essentially cut off portions of the Internet to all U.S. users.
Jimmy Wales, the founder of Wikipedia who first announced the move on his Twitter account Monday, said the bills are a threat to the free, open, and secure web.
Wikipedia is also requesting that readers contact members of Congress about the bill during the blackout.
“I am personally asking everyone who cares about freedom and openness on the Internet to contact their Senators and Representative,” Wales said. “One of the things we have learned recently during the Arab spring events is that the Internet is a powerfully effective tool for the public to organize and have their voices heard.”
So that is what has been on my mind lately. I know it was a lot. What are your thoughts?