Permanently Unabled

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This is an attempt at justification for the made up category of “Permanently Unabled.” This is NOT a new category of disability as the first bullet claims, it is a name for an undiagnosed and unknown condition. Nothing has shown that survival is only due to recent medical advancements, besides that being a moot point. The term “Pillow Angel” is an attempt to obfuscate and dehumanize these children. They are neither pillows nor angels. They are human beings, persons, children.

There is no proof offered that this constitutes less than 1% of any population, for if it was to have such a statistic, then there would have to be a diagnosis. You cannot claim an unknown is a certain percentage of anything. What is the evidence for this claim? Please back up this number with scientific data. Additionally, are they truly the “most vulnerable of society”? That says volumes about your care for her. She is more vulnerable in your home or in a modern medical facility then poor homeless children living in the street? What is this claim based on? The hospital has admitted that the procedures done were done illegally, they needed a court order which was NOT obtained. Hence, in my opinion, YOU have made your own daughter one of the most vulnerable of our society, a person on whom unprecedented, untested, surgical modifications were illegally performed.

Furthermore, bullet three has the bizarre requirement of “profoundly precious to their families” as part of the definition. Obscene use of “profound” and an obscene requirement of the made up category. The next bullet give the choice of a family’s loving care or getting “warehoused in institutions” as if those are the only choices for any child.

The next bullet alludes to another statistic that is backed up by absolutely no data. Some may believe that increased weight and size is their worst enemy, others believe it is the likelihood of dying of aspiration, stroke or seizure. What is this based on? What study shows this to be true?

Finally, this is identified as an “extreme condition.” No, it is an undiagnosed condition. She may continue through life as she is now, and not need your medical intervention. Individualized options in the hands of parents is not always an option. That is why we have family courts, social services, and laws to protect children.

4 thoughts on “Permanently Unabled

  1. The term “Pillow” was used to not refer them as pillows, but refer to them as gentle.You got a lot of passion for this topic, but I would advise you to research again before you try to rebuttal.
    The reason this organization been created was for other families with similar conditions being able to get help and help others. They love their children no matter at what stage they are. These kids may not be mentally fully developed, but they too can love and associate good with bad. Don’t be so literal in explaining the term “Pillow Angels”. it’s a metaphor and not direct.

  2. Pillow is used to referred to her because she is sweet and stays on a pillow where they put her. I agree it is dehumanizing. Children with severe disabilities have a right to be engaged with their environment in their own way and not just be seen as passive “pillows.” Unabled is also a useless term. Tell me what she can do, not that she can’t do anything, as the term implies. There is equipment to get kids with severe disabilities up and moving, and other assistive devices to help them achieve goals and be enabled. In the pictures, she is smiling and responding to some unknown cues in her environment. That doesn’t look “unabled” to me!

  3. Wow, you have clearly never been to an institution. My daughter had to stay in one for a few months. It was state of the art, literally just built a few months ago, most of the nurses there were genuinely caring people. Yet I can say with absolute conviction that none of the children there were receiving the same quality of care that they would if they were being cared for on a more individual basis. There is so much about caring for these children that involves constant observation, experimentation, creativity and intuition. You just can’t do that when you’re responsible for half a dozen of them, it’s all you can do to keep them fed, medicated, clean, and relatively comfortable. Very little can be done to keep them stimulated. Maybe an hour or two of one on one time with a therapist three times a week. it takes so much to figure out what actually interests them. I now know after a lot of fiddling, what type of music my daughter best responds too, what tone of voice to take, what sort of physical contact she likes, what type of books to read to her, which toys she’ll be interested in. Without having been around her constantly I couldn’t have figured these things out, no one else is able to illicit the same responses out of her. For you to imply that a social worker or the government would be able to tell what’s best for her is an absolute joke.

  4. “Wow, you have clearly never been to an institution.” LOL. My son has been in a full time residential program for 10 years and I visit him and check in several times a week. Your intuition fails you.

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