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This whole thread left me feeling as though I was being talked about. On one hand, the parent of a disabled child is characterized as an insensitive manipulative psychotic sort of attention grabber, using the child for attention. On the other hand, the parent of a disabled child is characterized as a holy saint for fulfilling God’s will against the evil world. Well, as an actual parent of a real multiply handicapped child, I can tell you that all of you are all washed up on this. Jose Fernandez is the only one who came close: this is not a mere philosophical discussion, this is a truly horrible thing that happened, yes, to me, the parent. And as the parent I am the only one whose business this is.
First of all, you forgot the scene where, because of the Hippocratic Oath, doctors are under a sworn duty to keep their patients alive. I myself was not asked about the life- supportive feeding tube that was surgically placed in my infant’s neck; the excuse given was that they could not contact me at 4:30 pm and it had to be done in the 45 minutes between when I was at work and when I would have arrived at the hospital. Because the doctor said that time was of the essence (it was not) naturally my husband gave his OK, over the phone, to what we figured out (only later) was a crucial decision. We also figured out that the time that was essential was that the Doctor leave at quitting time. It did not go unnoticed by me that it was the Father of that girl standing there in the news item, because I’d bet money he was the one that insisted on continuing the heroic life saving methods; which I’ll bet is why they divorced. The burden of a child is still mostly on the mom unless she is a CEO before she gives birth.
Second, it is NOT true that society supports a handicapped individual. This of course varies by country, but where I live, the parent supports the child totally until age 21 and then after that, the state provides a subsistence living, something they do for many other types of people that we don’t kill. If the person is able to work at all that amount of money is subtracted from the subsistence, thus thoughtfully guaranteeing the person a long life of lonely poverty. The family paid all the medical bills, extra costs, and support for the child and will until the child is dead unless we leave him penniless. True, the extra costs of medical care do go to the insurance costs—just like I pay for people’s medical costs that are alcoholic, or smoke cigarettes, or beat each other up.
And you are also wrong that the child “doesn’t know” what they are missing: they may have perceptive abilities beyond their expressive ones, and they certainly have the ability to feel rejection. As a result, the responsibility for such a life is sort of like having your child die, not just on the day of birth, but every day thereafter for the rest of your life, as you hear and watch the terrible thoughtless things that are done and said to someone you love, because of the disabilities. And no amount of maternal love or self-satisfied sense of “charity” makes up for that repeating sense of loss. You do feel responsible for that because somehow you did not make the decision that protected your child from harm. It is the other people who make the sickening comments about how “you must be so patient”, etc.
So you see, I can joke about being talked about, but unless anyone of you is going to have such a child then you have no business talking about it. And if you ask, as I have been asked, “Would you talk to my friend’s husband and convince him that the best thing to do is to give birth to this baby with a known disability?” or “Do you think it’s a good idea if I adopt a special needs child” or “Would you recommend adopting a child with these _______problems?” Our answer is: NO. You would be crazy to take it on voluntarily. On the other hand, how dare you say that you have never learned anything from a person with a disability—I would say, you probably have not spent much time around them, preferring to avoid them as most people do. It’s more fun just to talk.
Yours is the voice of reason. Thank you for posting this.
The degree of 'severe handicap' is far worse than autistic or blind and deaf. If you read the article, you will find it takes in the babies who are so severely disabled that there will never be anything about their lives that can be construed as normal, and they will never have a quality of life.
There are a number of aspects to be considered here.
From a parents' view, there is guilt; first for giving birth to a child so severely disabled, and second for wishing their child had been born normal. These parents are convinced the severely disabled child 'teach' everybody around them compassion, etc., and in reality, it is exhausting to care for these kids, draining on family resourses and makes life difficult for siblings with all attention paid to the disabled on a breathing tube or feeding tube who will never speak, eat, live any kind of life besides what they have at that very moment.
It isn't the JOB of any disabled kid to be a teacher of any kind.
Another is selfishness brought on by the guilt. The parents who insist on how wrong it would be to allow death, or put to death, a newborn of theirs who will never know them or live with any more understanding of life than what they posess at the moment of birth, don't think about anybody except themselves. They don't think about the siblings or caregivers that are inevitably going to be needed, or the resourses needed to sustain a growing person who will never respond or be anything other than a living lump (harsh, but true).
Consider the cost of keeping a person alive from birth to death (sometimes many, many years) who is severely disabled. It isn't the parent who pays that bill. The cost of medication would be astronomical, then there would be therapy, respite, piles of endless doctors, ventilative equipment, feeding equipment, special wheelchairs, special vehicles, surgeries, endless manpower, etc., all of which has to be paid for. Insurance? Sure, that's one reason why rates are so high. There is not one family prepared to contain the cost of caring for a severely disabled offspring from birth to death, yet because of that guilt, those parents insist those babies are made to stay breathing at any cost to everybody else.
I treasure babies and children as if they were all my own, ask my kids, but I agree that allowing them to pass at birth, or put to permanent sleep (the word kill is not socially acceptable to use in the same sentence as infant) if so severely disabled they will never know anything but pain and mere existance, and not even be aware of that, is something that should be considered.
This whole thread left me feeling as though I was being talked about. On one hand, the parent of a disabled child is characterized as an insensitive manipulative psychotic sort of attention grabber, using the child for attention. On the other hand, the parent of a disabled child is characterized as a holy saint for fulfilling God’s will against the evil world. Well, as an actual parent of a real multiply handicapped child, I can tell you that all of you are all washed up on this. Jose Fernandez is the only one who came close: this is not a mere philosophical discussion, this is a truly horrible thing that happened, yes, to me, the parent. And as the parent I am the only one whose business this is.
First of all, you forgot the scene where, because of the Hippocratic Oath, doctors are under a sworn duty to keep their patients alive. I myself was not asked about the life- supportive feeding tube that was surgically placed in my infant’s neck; the excuse given was that they could not contact me at 4:30 pm and it had to be done in the 45 minutes between when I was at work and when I would have arrived at the hospital. Because the doctor said that time was of the essence (it was not) naturally my husband gave his OK, over the phone, to what we figured out (only later) was a crucial decision. We also figured out that the time that was essential was that the Doctor leave at quitting time. It did not go unnoticed by me that it was the Father of that girl standing there in the news item, because I’d bet money he was the one that insisted on continuing the heroic life saving methods; which I’ll bet is why they divorced. The burden of a child is still mostly on the mom unless she is a CEO before she gives birth.
Second, it is NOT true that society supports a handicapped individual. This of course varies by country, but where I live, the parent supports the child totally until age 21 and then after that, the state provides a subsistence living, something they do for many other types of people that we don’t kill. If the person is able to work at all that amount of money is subtracted from the subsistence, thus thoughtfully guaranteeing the person a long life of lonely poverty. The family paid all the medical bills, extra costs, and support for the child and will until the child is dead unless we leave him penniless. True, the extra costs of medical care do go to the insurance costs—just like I pay for people’s medical costs that are alcoholic, or smoke cigarettes, or beat each other up.
And you are also wrong that the child “doesn’t know” what they are missing: they may have perceptive abilities beyond their expressive ones, and they certainly have the ability to feel rejection. As a result, the responsibility for such a life is sort of like having your child die, not just on the day of birth, but every day thereafter for the rest of your life, as you hear and watch the terrible thoughtless things that are done and said to someone you love, because of the disabilities. And no amount of maternal love or self-satisfied sense of “charity” makes up for that repeating sense of loss. You do feel responsible for that because somehow you did not make the decision that protected your child from harm. It is the other people who make the sickening comments about how “you must be so patient”, etc.
So you see, I can joke about being talked about, but unless anyone of you is going to have such a child then you have no business talking about it. And if you ask, as I have been asked, “Would you talk to my friend’s husband and convince him that the best thing to do is to give birth to this baby with a known disability?” or “Do you think it’s a good idea if I adopt a special needs child” or “Would you recommend adopting a child with these _______problems?” Our answer is: NO. You would be crazy to take it on voluntarily. On the other hand, how dare you say that you have never learned anything from a person with a disability—I would say, you probably have not spent much time around them, preferring to avoid them as most people do. It’s more fun just to talk.
God bless your child and your family! I can truly relate.
Location: Visitation between Wal-Mart & Home Depot
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Quote:
Originally Posted by nitokenshi
I am not a parent but I agree with this and I also feel like any parent who doesn't agree is not thinking about the child suffering but about them suffering without a child
Comes through pretty loud and clear that you aren't a parent and you are taking an irrationally bold stance on an issue that you do not and can not fully understand. This is incomprehensibly complicated and while I absolutely will not opine one way or the other, I can tell you without reservation or exception that it is not as simple as "I agree with this doctor" or "I do not agree with this doctor." You need to hold your own baby before you can see how impossible the question is.
I am not a parent but I agree with this and I also feel like any parent who doesn't agree is not thinking about the child suffering but about them suffering without a child
I am a parent and I agree with this post completely.
Then never get pregnant. Because you never know what you're in for.
What rot. That's like saying don't ever get into a car because you never know what you're in for.
Accidents happen. Birth defects happen. That doesn't mean you avoid life.
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