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There are several things to consider (please keep in mind I'm not offended by your comments, I just want to provide an alternate take on a couple aspects):
First, it's important to note that nobody is requiring you to do anything. Any care that you contribute is for some personal reason, albeit charity, a feeling of obligation or pity, love or respect for your mother... if you help out, I don't know what motivates you, but you have no binding obligation to do so.
It's not safe to argue that severely or even less-severely disabled people are not human, less human/less deserving, or have no potential. There are many outside factors that compound with their personal physical/mental state that leave a heavy mark. Science has shown that the earliest years of a child's life are the most important in their development, and maybe that is when these disabilities are just being diagnosed or assessed, maybe the child was born to parents who couldn't handle the challenge or didn't have the means to face it properly - there are a number of contributing factors that steer the disabled person's life in any of a million different directions.
Although the world has made enormous advances in science and technology, there are many things that we can't yet accomplish and we don't yet understand. The brain is one of science's greatest mysteries. We definitely know enormously more than was known even 30 years ago, but these advances are a mere fray on the edge of the whole topic- it has much to go before unraveling and revealing its secrets. However, when a disabled individual gets dedicated love and attention, progress can be made. Your distant cousin, for example, is autistic and has parents who make a tremendous effort on his behalf; he is now rated at a lower level of autism than in his younger years. Another example: the girl I used to work with has cerebral palsy, and although she can speak and has a limited level of motor ability, her twin sister is nonverbal and has very little motor control. much like the little guy in your home. Fortunately for this girl, her mother is very ambitious and pro-active, and she is currently attending college. She does require 24-hour care, as does her sister, but still she is able to pursue a college education. I saw a video she had made for a high school project, and it was very intelligent and interesting.
Now, imagine if she had been born into a different family, one less capable of providing or even understanding her needs and how to deal with them or make life work for her. In that situation, she might never have been able to communicate with anybody or express what she is thinking, and it's very likely that the people around her would never know her mental abilities, simply since she can't communicate them in the conventional way. In that hypothetical situation (which is undoubtedly real for many disabled individuals), she would have appeared to be just a drooling, barely living, helpless being. You say the ultimate goal for the little boy in your home is that he will be able to have the dexterity to drive his own wheelchair and push a button on a computer. I think the true goal for him is to figure out a way for him to communicate so that he can explore the potential of his mind. It's been proven in other nonverbal individuals with cerebral palsy that the condition affects his body rather than his mind, and that if he could unleash the powers of communication, he would be able to explore vastly more in life than if nobody helps him find a way to communicate. Sometimes the answers aren't as obvious and easy as we expect and take way more effort.
What do these individuals contribute to society? As far as the truly severely disabled individuals go, probably not much that is tangible or calculable in terms of money or intellecual contributions. Take a moment to think about one of your favorite movies: A Beautiful Mind. The protaganist had an illness (I assert that mental illnesses are akin to disbilities), yet in the end he was able to overcome it and won a very prestigous award for his great intellect. Some people rejected him because of his illness, which made him different and difficult to be around, but he was lucky to have others who helped him through the rough times and helped him learn how to deal with it, or at least supported him on the way. What about the other people with his same illness? If they can't give intellectual or other contributions (say their illness drives them to do things that land them in jail or homeless or unable to keep a job), are they less deserving of living a decent life or of living life at all? (here's an interesting article, "Million-Dollar Murray" by Malcolm Gladwell from the New Yorker [issue 2006-02-13 and 20] that is worth a look. He discusses the problem of homelessness and how it is dealt with.)
Also consider a movie that probably isn't one of your favorites: Radio. The protagonist here is disabled young man with less talent and measurable contribution to society, but he was able to forge compassion, tolerance and understanding in others around him. If that's so worthless, why did they make a movie out of it, why do people like the movie? He was not totally dependent like the kids you are discussing, but even the kids you talk about teach people to control themselves and learn positive traits such as tolerance, compassion, patience and understanding.
What about my life? I rarely get calls from family or friends who don't live in the immediate vicinity. That could be counted as an indicator that I am not too worthwhile. I am currently employed as a staff assistant for a research doctor/professor. I suppose the fact that I assist him in accomplishing his great contribution to society makes me a little worthwhile. Before that, I worked as an administrative assistant in the legal department of a global wealth and investment management firm. They are all about making money and getting rich, so I guess if you think life is all about making money and getting rich, then I was a little worthwhile for supporting them in their endeavors. Before that...well, I haven't really contributed much to society, and honestly, I don't foresee myself contributing anything great or worthwhile (in the common sense) to society in the future. So why should I get to live? Just because I can do it independently and because I can express pleasure in being able to do so? I've still had times recently where I shamefacedly have to ask my mom to bail me out so I don't get caught in a pinch at the end of the month. So far, I'm flunking the worth-keeping-around-in-society test.
Frankly, your comments implying that we need to purge our society of these individuals that are different and cause us discomfort sound rather Hitleresque. If we look closer, we will see that the real problem lies not with the disabled individuals, but within the rest of society. Ideally, there would be a compassionate, devoted person lovingly dedicating him/herself to support the existence and encourage the progress of each disabled individual. One of the main problems with that? There aren't that many truly compassionate people willing to dedicate themselves patiently to the cause. Most of us are too selfish, busy and self-centered to offer that kind of service. I know I definitely fall into the latter category and could never do it. I don't have the selfless 24/7 devotion necessary to successfully fulfill the need these individuals have; that's one of the reasons I wasn't able to keep that 24/7 personal care attendant position I had. Some people have it and some people don't. The mother of the girl I helped didn't understand why I couldn't do it, but they had already gone through approximately and attendant per semester before me, so I'm obviously not the only one who couldn't handle it. I think most people wouldn't be able to. Mom is one of the few people who fall into the former category and is able to find fulfillment in doing something that most of us can't handle. You propose that unpaid, voluntary foster care is the solution. Foster care already is voluntary- they certainly don't go around serving mandatory foster care service papers to anyone- and I hope that the people who offer their homes and services to caring for the disabled believe in what they are doing. Unfortunately, most of the people willing to give this kind of devoted service are not wealthy. The ones who could afford it without external financial support are by and large the ones who fall into that latter self-centered, busy category (not to say they aren't good or nice people, just not willing to sacrifice the time, social mobility, etc that it takes to give the necessary attention to these needy kids).
Why should normal kids be given more priveleges than disabled kids? You contend that severely disabled people are no more than animals. Human beings as a whole are basically animals. We have the features of mammals, and all our basic instincts are the same as any animal: eat, sleep, reproduce. We have a more sophisticated brain that has allowed us to develop enormous and varied societies. But when it all comes down to it, we are more or less animals. Not only do we not know what is actually going on inside the minds of these disabled individuals, but it's not their fault they are that way. I think rather than fear of death, it's an innate compasison for humanity that drives people to put forth an effort on behalf of people who can't fend for themselves. It's inhumane to say a society should be cleansed of anything that makes it imperfect. There are many skills that could be developed by learning at the least tolerance for members who are different or less capable. A society not willing to learn to successfully with things that make life more difficult is not only intolerant, but greedy and close-minded.
hopefully I didn't leave out any important points I wanted to make and hopefully it was more or less coherent... this is my third time around so I'm getting a little tired of typing and rereading. I'm not trying to change your mind or make you have charity or love towards any of these people that you think are not worthwhile, but I do hope that what I wrote will encourage you to rethink your position and at least have more patience and tolerance toward things you can't understand or control. I think there are a lot worse ways the government is using our tax dollars that truly should be purged, but I think societal problems deserve a better solution than depriving needy individuals of money and condemning them to fending for themselves in a world that doesn't care.
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Their response:
Can you imagine what would happen if that money were put into our school system instead? For every 1 of him, we could send 20 people through college. And he's definitely not the only one in the system.
My point was just to make people think about where our resources are going... what are our priorities and why are they important? I don't find programs like this important. And yet I'm required to pay taxes to (indirectly) support the programs I don't like. It frustrates me.
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My response:
I understand your frustration although I don't agree that it's fair to take it out on the group you are focused on- the foster care system is but the tip of the enormous iceberg we call government. Let's imagine a political cartoon where the Titanic is about to be ripped open on the iceberg: we can label the iceberg "US Government" and we can label the ship "The United States of America". Our nations problems are sure to catch up with us someday.
I guess they pay that much because how are they even going to convince the charitably-hearted people that it's worth their effort. Even the nice people won't do something for nothing or for an average amount. (you could send 20 people to shasta college, but only one to harvard - not including the cost of living- for the price of raising him.) Most of the people I know don't make that much- wealth is inequally spread- I know some people so wealthy (on two six-figure incomes undoubtedly) who just buy what they want when they want it. They rented one of those kiddie blow-up boundy things for their son's bday and he liked it so much they just bought one. Most of the people I know have to struggle and save and still have a hard time breaking even after doing all their shopping at wal-mart and target.
Even like in A Beautiful Mind- his illness wasn't recognized early, it was caught when his behavior was becoming destructive. I don't agree that after a certain point it's not worth the effort anymore.
I'm required to pay taxes for all sorts of programs that I find pretty useless. My point is that these people are still human and deserve care even though they aren't going to improve a lot- any improvement is a success for them. Can you imagine if there were no political agendas to screw up the way our funds are used and allotted and regulated? The n our school systems wouldn't suffer, elder care wouldn't be such and issue, homelessness could be better addressed... We can only dream- people are too apathetic and greedy to do anything about it.
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