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Author Topic: disabilities  (Read 4580 times)

Ruth

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disabilities
« on: September 21, 2008, 03:55:50 AM »
I'm starting a new thread because this doesn't belong in the "Palin" thread, although that thread seems to be off topic and headed in this direction.

My pre-China job was working for the government in Florida in a developmental disabilities program.  I have been foster mom to kids with disabilities.  I have family members who were born with disabilities.  My cousin was told that she didn't have to take her (disabled) baby home from the hospital if she didn't want to.  We were horrified to hear that in late 20th century Canada.  I write this as background so those of you who don't know me can understand where I'm coming from.  Also, I'm in the camp that believes that life begins at conception.  I'm in the camp that believes late-term abortions ARE murder.  If the baby can be yanked out and the yanking doesn't kill him or her (not IT), and s/he can live on her/his own, then by killing in the womb, you ARE killing.  But I don't want this thread to be about abortion. 

I want to discuss disabilities.  And to keep it relevant to the Saloon being a forum about China, let's discuss what happens to babies who are born disabled in China.  Does anyone know?  I've asked students before and received answers like, 'Their parents keep them at home,' 'There are special schools for people like that.'  When sharing with a friend that people with disabilities are trained for jobs like wiping tables at McDonalds back home, she replied that people like THAT aren't out in society in China.  Disappointed me.  Anyone got further light to shine on the prevailing opinions here (in China, I mean)?
If you want to walk on water, you have to get out of the boat.

Spaghetti

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Re: disabilities
« Reply #1 on: September 21, 2008, 04:08:52 AM »
The only times i've seen seriously disabled children, as in those who couldn't function without constant support from caregivers, were when they were on the street with their parents scrambling for hand outs.

I have seen functionally disabled individuals in many places. At one university we had a couple of students who used motorized wheelchairs. I've taught students with visible limps from near crippling childhood injuries and birth related causes, and one student who had lost their leg to reasons unknown to many*.


*Not that anyone felt it important to want to know.

Dig around google about the bizarre laws regarding dog size requirements in Beijing that prohibit many blind people from having seeing eye dogs. It will break your heart.


I'm of the opinion that late term abortions aren't murder. Killing abortionists, however, is.
"Most young people were getting jobs in big companies, becoming company men. I wanted to be an individual."
Haruki Murakami

Ruth

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Re: disabilities
« Reply #2 on: September 21, 2008, 04:10:11 AM »
Not post-padding, just wanted to keep this thought separate from my thoughts above.  This story has circulated through my in-box before, but just received it (again) yesterday and it hit me, especially in light of the way the 'Palin' thread is going these days.

Two Choices

What would you do?....you make the choice. Don't look for a punch line, there isn't one. Read it anyway. My question is: Would you have made the same choice?

At a fundraising dinner for a school that serves children with learning disabilities, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question:

'When not interfered with by outside influences, everything nature does, is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?'

The audience was stilled by the query.

The father continued. 'I believe that when a child like Shay, who was mentally and physically disabled comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child.'

Then he told the following story:
Shay and I had walked past a park where some boys Shay knew were playing baseball. Shay asked, 'Do you think they'll let me play?' I knew that most of the boys would not want someone like Shay on their team, but as a father I also understood that if my son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.

I approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, 'We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in to bat in the ninth inning.'

Shay struggled over to the team's bench and, with a broad smile, put on a team shirt. I watched with a small tear in my eye and warmth in my heart. The boys saw my joy at my son being accepted. In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic > just to be in the game and on the field, grinning from ear to ear as I waved to him from the stands..

In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat. At this juncture, do they let Shay bat and give away their chance to win the game?  Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball.

However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact.  The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher. The game would now be over. The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game. Instead, the pitcher threw the ball right over the first baseman's head, out of reach of all team mates. Everyone from the stands and both teams started yelling, 'Shay, run to first! Run to first!' Never in his life had Shay ever run that far, but he made it to first base. He scampered down the baseline, wide-eyed and startled. Everyone yelled, 'Run to second, run to second!' Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball - the smallest guy on their team who now had his first chance to be the hero for his team. He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions so he, too, intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home. All were screaming, 'Shay, Shay, Shay, all the Way Shay' Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, 'Run to third! Shay, run to third!'  As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, 'Shay, run home! Run home!' Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team.

'That day', said the father softly with tears now rolling down his face, 'the boys from both teams helped bring a piece of true love and humanity into this world'.

Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making me so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!

AND NOW A LITTLE FOOT NOTE TO THIS STORY:
We all have thousands of opportunities every single day to help realize the 'natural order of things.'  So many seemingly trivial interactions between two people present us with a choice:  Do we pass along a little spark of love and humanity or do we pass up those opportunities and leave the world a little bit colder in the process?

A wise man once said every society is judged by how it treats it's least fortunate amongst them.
If you want to walk on water, you have to get out of the boat.

Lotus Eater

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Re: disabilities
« Reply #3 on: September 21, 2008, 04:15:30 AM »
Orphanages are filled with disabled children.  Parents who have a disabled child are permitted to have a 2nd child.  Some of the places I have seen (the orphanage in Lh'sa, the Hongdandan institute in Beijing) do train the disabled to work, but generally not in the public eye. There are the "Blind massage" places in each city.

There is also the highly disturbing, deliberate disabling of young children to give them a life as a beggar.

Schools that teach the deaf to sign or lip read etc cost too much each semester to allow many families to send their child there.

The SIFE students from here have a program where they contract with the Gov't run Disability Association to have the disabled make paper flowers and they sell these flowers and donate the money back to the people to help them start small businesses.

There are complaints about the Gov't Disability Association - comments like - "the disabled go there all day and only play cards, they don't learn anything".

Don't know if that helps.

Spaghetti

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Re: disabilities
« Reply #4 on: September 21, 2008, 04:15:59 AM »
"Natural order of things" pre supposes a religious belief. It places an agenda that everything is predetermined, presumably with some kind of human logic behind it by a superior "being."

I don't buy into that, so the report lost me.
"Most young people were getting jobs in big companies, becoming company men. I wanted to be an individual."
Haruki Murakami

Ruth

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Re: disabilities
« Reply #5 on: September 21, 2008, 04:37:35 AM »
Lotus, thanks for that insight.

Spaghetti, let's forget the 'natural order' then.  What about kids being kind to another kid who is not like them?  What about how society treats those who are differently abled?
If you want to walk on water, you have to get out of the boat.

dragonsaver

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Re: disabilities
« Reply #6 on: September 21, 2008, 04:51:57 AM »
And ...

As Ruth said in the beginning of this topic:  Make it a discussion about China.

What have you seen here in China?  How is it different than in the west? 

We have had threads about dyslexia and how it is ignored in China.

We have also had comments about learning disabilities.  That students that were slow learners were passed to the next grade even though they could not understand the work or the lessons.  I am not talking about the little emperors, I am talking about grade school aged children.

Those that teach kindergarten or grades 1-6.  What have you seen?
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Spaghetti

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Re: disabilities
« Reply #7 on: September 21, 2008, 05:15:23 AM »

Spaghetti, let's forget the 'natural order' then.  What about kids being kind to another kid who is not like them?  What about how society treats those who are differently abled?

I think children are generally cruel in a group dynamic. Its that awkward peer pressure and assimilation factor. I view the cruelty as a reflection of bad parenting and to a lesser degree (but to a degree) bad mentoring by teachers and adults they interact with daily. In North America, the notion of personal responsibility and responsible parenting has been falling apart for a while. Far too much of the "blame" game goes on (tv, lack of religion, etc.) rather than looking inward and realizing that it all begins and ends with the parent-child relationship.

It is sad, in the case of America, that we still fall into the extreme camps of overprotecting or marginalizing the disabled. For the most part, many of our citizens haven't emotionally matured enough to rise above such extremes and find rationality in it. It goes full circle, because it begins when we are children and it is shaped by the group dynamic to an extent, but by our parents to a substantial degree.

I recall growing up in an era when the developmentally disabled children at my school were almost like ghosts. You'd see them on their bus, in the halls on their way to wherever, and going to their classroom, which was not divided by grade, and maybe in the lunch room, segregated by themselves by administrators. That was it. That didn't help tide the cruel jokes and innuendo from the 'Normal' kids. The segregation only contributed to the problem. Many schools have made greater efforts to naturally integrate the students in activities where the disabilities are not a hurdle for either part of the student body. Arts and crafts, recess, assemblies, music class, and things like that.

I am fairly certain it will be a long, long, terribly long time before China comes close to even attempting that. Hell, it took America a long time, too.
"Most young people were getting jobs in big companies, becoming company men. I wanted to be an individual."
Haruki Murakami

cheekygal

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Re: disabilities
« Reply #8 on: September 21, 2008, 06:07:50 AM »
I will share what I have experienced myself in the process of being pregnant. First of all, the pregnant woman is entitled to undergo NT scan - an u/s scan that can determine risk of dawn syndrome and physical disabilities in fetus between 11 and 14 weeks of pregnancy. Based on the result, an amnio test can be ordered which will determine definite risk. Now, at around 16 weeks there is also a blood test for serum to determine the same risk. And again in a case of high risk, an amnio is required (every time you sign papers that are saying you have been informed about the risks)
At the request of patient, they can do another test at earlier stage called CVS. That way you can determine whether the baby is definitely going to have disabilities or not (and even gender) as early as possible and make a decision based on that.
Unfortunately, people here in general are ill-educated on these issues and they skip the risk factors and still have the child which they later either abandon or hand over to grandparents or some caretakers.

I am with Ruth on late pregnancy termination (unless for very strong medical reasons that pause high risk to mother and fetus). I also feel strong about abortions in general but I can't judge as people do them based on different reasons and I am not in their shoes.

I have taught couple of ADD children in China and I must say they struggle a lot because they are put in the same classes as other kids quite often and if they are lucky not to be the center of fun-making, they still struggle because they can't follow, they are easily upset and lots of times parents just don't make an effort to give them special attention they need.

School teachers quite often are too strict with these kids because their attention focus is bad and they simply get angry and punish these kids a lot. I had a kid hanging out in my English class at the primary school in Beijing. He was a kind kid and he was trying to communicate with me in English but he was a distraction to the class. I would always gently but firmly ask him to sit down and not to talk. Some kids tried to say he was stupid or crazy, I reminded them that it isn't the way to call people like him. He is very special and he needs special attention and their help. I would give them an example of different trees and how some trees may be crooked and weak but they are still trees with leaves and branches and they steal grow and develop but just in their own way. This kid wasn't my responsibility - it's just that he had no place to be during my English classes, so they'd just *dump* him on me :)

Another kid I taught was in kindy. He had mild ADD case and I realized it quite fast because sometimes he would ask to go to the bathroom and after few steps he'd stop and start looking around or just freeze and stare at one point and he would totally forget where he was going. He was slower than other kids and very moody. He'd get scolded by teachers and punished in some thankfully non-physical ways. I explained the head-teacher of the class (without pointing out that perhaps his parents need to have a check-up for him and a special problem) that perhaps this kid just requires more attention from the teachers as he may be just catching up a bit slower and he needs to be rather approached with MORE kindness. Luckily, all the teachers in class were much younger than me and they kinda looked up to me, so they changed their tactics. And the kid improved more as they spent more time with him.

Lotus Eater

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Re: disabilities
« Reply #9 on: September 21, 2008, 06:22:37 AM »
In general I don't think humans react well to others who are different.  Maybe from fear, maybe from revulsion, maybe a mix of things.  I think, that although the story is lovely, I also think it is apocryphal - a nice urban myth to raise some awareness.

Minor disabilities are relatively regularly seen around.  I have one student who is missing a hand, and have seen others with hip dysplasia etc., but rarely with anything exceptionally disabling.

Ruth

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Re: disabilities
« Reply #10 on: September 21, 2008, 06:59:13 AM »
I'll buy the urban myth.  That story is just about too perfect to be totally true.  Here's a true one:  My kids were 2 and 4 years old when Janice (aged 13) came to live with us.  She looked like every other kid, but she wasn't.  With lots of repetition and patience (from the teacher) Janice could learn lots of things - like how to sweep the floor and make her bed - but couldn't learn numbers, colors, letters or take much initiative to think for herself. I could never leave her alone; she'd stay in a dangerous situation unless someone told her what to do. In the spirit of having her spend as much time as possible with kids her own age, I took her to our church's youth group.  I stayed with her for a few evenings and watched something beautiful taking place.  They played volleyball.  Janice stood still with her arms raised, but was never quite fast enough to hit the ball and help her team.  In fact, she was kind of in the way of others trying to play. (This is me playing sports too, and it has nothing to do with my mental ability, but I digress.)  My point is that the other kids continued to include her.  They did such a great job of it that they told me I didn't need to stick around on youth group night, that they would be responsible for Janice while she was there.  The KIDS, that is, not the leaders.  This was not an isolated incident.  Janice was a part of our family for four years.  My kids grew up accepting her the way she was.  She could do some things they couldn't do, like reach the light switch because she was taller.  They could do some things she couldn't do, like read.  Just like there are forum members here who understand computers and the world of finance and I have trouble understanding what the heck they're talking about.  Differently abled.  All valuable human beings.

Do kids in China get this opportunity?  I don't see it.

Like Cheeky, I met a couple of kids in a kindie.  This was a kindie I only worked in for a week, so no chance to do much other than observe.  One class (of 30 kids  aoaoaoaoao) had a little boy who was probably autistic.  He'd play with blocks off to the side and stay in his own little world.  One day I had the group gathered around me and this little guy started banging the blocks and shrieking.  The aid grabbed him, sat him in a chair alongside the other kids and pretty much made him sit there quietly during my lesson.  This kind of 'teaching' isn't right for ANY kindie kid, let alone one with those kinds of problems.

In another class, this one with only 16 kids, there was a little girl with Downs Syndrome.  Her teacher seemed to be caring.  The other kids in the class responded that way too.  They made allowances for this little girl and went out of their way to help her.  Heartwarming to see.  But what happens to these kids after kindergarten?
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Spaghetti

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Re: disabilities
« Reply #11 on: September 21, 2008, 07:27:16 AM »
Unfortunately, people here in general are ill-educated on these issues and they skip the risk factors and still have the child which they later either abandon or hand over to grandparents or some caretakers.

Are people in China legally allowed to know the gender of their child? I haven't reared children in China, so I have not experienced this. Perhaps I'm mistaken, but "above the board," I thought I heard doctors were not allowed to inform parents of a child's gender, to prevent termination based on gender preference.

In addition to this, I think there's more to the situation than lack of education. Not every educated or undereducated person has the finances to afford a litany of medical exams in China. Then there's simply the incredibly poor medical system, a poorer quality degree of health education in classrooms and on television*, and the preponderance to trust hearsay and gossip from neighbors over scientific fact**.



Quote
I am with Ruth on late pregnancy termination (unless for very strong medical reasons that pause high risk to mother and fetus). I also feel strong about abortions in general but I can't judge as people do them based on different reasons and I am not in their shoes.

That's an important factor. Personal choice. I applaud that you made and accepted the decision you made for yourself and your family. However, it's touchy when it comes to forcing one's way of life onto another, especially when it comes to something deeply personal an individual's reproductive rights and denying the opportunity to choose.

The science at this stage is both impractical and costly to determine if an individual is susceptible to producing offspring that are disabled BEFORE consummation. Raising any child isn't cheap, but raising a child with disability is a tremendous financial burden that even citizens of a developed nation struggle with. In China it's thirteen million times more difficult. As a result, one consummates with the hope of a healthy, fully developed child. Such foresight isn't available for most people.

Take, for example, if a person knew that their genetic make up would guarantee any child they seed would be born with physical and emotionally developmental defects based on the father's make up, they could elect to get  a vasectomy to spare their wife (and themselves) the burden. However, if they have no financial means to afford such tests, the only affordable back end is to terminate the pregnancy if they cannot take on the burden of the child.

the adoption situation in China is messy. It appears more children go in than come out of the system, just like America. In the case of developmentally disabled children, I'd venture to guess that their chances of adoption are even slimmer than they are in America.

For those individuals, the situation is tight, educated or not.


* - I haven't even seen exercise programs on television. No health care for the elderly news talk shows, nothing about parenting. Someone needs to give Xiao Wu (小巫) a show! She's the T. Berry Brazelton/Dr. Spock of China.

In regards to the disabled, how many spots or educational programs about the dsiabled did Beijing show off during the paralympics? Nary a one, form what i observed. Torch runs don't count...

*** - not that such behavior is exclusive to China. Nor is it without merit, given how the central source of (mis)information here gives locals and expatriates questions about its credibility.

"Most young people were getting jobs in big companies, becoming company men. I wanted to be an individual."
Haruki Murakami

cheekygal

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Re: disabilities
« Reply #12 on: September 21, 2008, 07:48:40 AM »
@ruth - They get shoved into the primary then middle school. If the parents have enough money, they finish school AND college. If not - don't know and hope nothing bad. Lots of parents of these kids feel ashamed and keep pushing these kids without giving them proper care. It IS very challenging especially if autism is in its grave stages. But what is even more sad is that parents don't have a chance to get proper help and education on this matter.

@spaghetti - no, they aren't. Because there were lots of cases when the pregnancies were terminated due to the unwanted gender.
I was referring before to the situation when you are aware at the early stage about disability, decide to keep the child and then simply abandon it for the orphanage mercy. In this case I think not bringing the child to this world would be a better solution because that child most likely isn't going to get any love and care AND may end up being abused. I can give you an example: we used to go to one club to dance in Beijing and there was a flower girl selling flowers by the door. She was clearly autistic (you could see from her behaviour and speech). The girl was quite young. 13?14? So... a few times the driver from this club has been spotted of taking her behind the club. I have seen him coming back with her from behind the club. I was a bit surprised and asked a few people whether he was her father and was taking her for a walk. But apparently it was not that. No one had a proof and even if someone had, they would never interfere. It is very sad. Regular kids get abused here and there but it is even worse when a child with disability is taken advantage of and she was probably not able to tell anyone anyway...

As for genetic make up and stuff... As I said, people here are ignorant about LOTS of things including the diseases they had in the family, pregnancy after 35 risk factors and so on. I can also suspect that in some places still they don't do testing during pregnancy for genetic disorders hence when children are born it is a big disaster for them (that is actually both due to lack of finances and lack of proper education). I have talked about it with a few Chinese friends here and they told me their regular Chinese insurance covers maternity and all the tests are included.
But then again... it is a very complicated subject and it is very hard for a mother to make a decision at any stage especially if the woman has been struggling with conception.

I don't know what I would have done in a situation like that. I am a religious person and I am thankful to God for having a healthy child and I pray everyday that all my children are.

cheekygal

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Re: disabilities
« Reply #13 on: September 21, 2008, 07:50:04 AM »
P.S. abortion matter apparently goes along with this discussion especially when we talk about China. I just wish people were more aware of risks and given a chance to conduct necessary tests in order to make more rational decisions.

Acjade

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Re: disabilities
« Reply #14 on: September 21, 2008, 10:14:44 AM »
I know, very well, a young man with Down's Syndrome who is well looked after by his family and greatly loved. His mother is a practising Buddhist and he also has five other money-earning and child-bearing siblings. But the love is there. They certainly don't hide him away.

And sometime during the earthquake's first waves of fear when me and my neighbours were out on the streets looking for each other, I met a woman with a son in a wheelchair. I think he was very mildly spastic. Mind fully alert but not able to control his legs. And the first father and daughter I ever saw together in China was in the lobby of the Peace Hotel in Shanghai, the first morning after my arrival. She was beautifully dressed and holding her daddy's hand. I thought she a real little princess and it was obvious that daddy did too. But she had something very wrong with her leg. On the other side of things I've encountered scores of people suffering mental problems who have been left to survive on their own. I've also met many abandoned disabled children but these have all been adopted or taken into care.

I think (or is it only that I hope) China is slowly changing in this regard. Not too long ago in Australia people would abandon their 'soft' or physically disabled children in institutions. Education is the key.
« Last Edit: September 21, 2008, 11:39:48 AM by Acjade »