未登录,请登录后再发表信息
最新评论 (0)
播放视频

日本人的轮椅生活

Living in Japan with a Physical Disability

我是百合子小田 我患的是远端性肌病
I’m Yuriko Oda and my disease is distal myopathy
HIBM/DMRV/GNE 肌病
HIBM / DMRV / GNE Myopathy
在我20岁的时候 我感觉我的腿部有一些反常的变化
When I was 20 years old I feel some abnormal change with my legs.
然而在我22岁的时候就被诊断为远端肌病
And when I was 22 years old I was diagnosed with distal myopathy.
当我26岁的时候
When I was 26 years old
我开始使用轮椅因为我不能像往常一样的走路
I began to use wheelchair because I couldn’t walk as usual.
我有孩子 所以我和我的丈夫和孩子经常一起去外面
And I had baby, so I and my husband and my baby go outside together.
我是乔西·格里兹代尔 我来自加拿大
My name is Josh Grisdale and I’m from Canada,
最初在多伦多附近 现在我已经定居在日本大约八年了
near Toronto originally, and I’ve lived in Japan for about eight years now.
我患了脑瘫 它意味着在我小时候 我的大脑就有损伤
I have what’s called cerebral palsy and it means that i had brain damage when I was a kid.
也许是大约在我出生六周的时候 我发过一次高烧
It might have been a high fever I had when I was about six weeks old.
从那以后它影响了我的四肢所以我再也不能随意的行动
So after that it effected my arms and my legs so i can’t move them as I intend to.
并且我的大脑和我的身体之间的交流也出现了问题
And communication between my brain and my body is the problem.
我的名字是土屋峰一
My name is Minekazu Tsuchiya.
我是STEP江户川会社的一名办公室经理
I’m an office manager at STEP Edogawa.
28年前我出了一场摩托车事故
I was in a motor bike accident 28 years ago.
从那以后我和父母一起住并且经常去医院
Since then I lived with my parents and went to the hospital.
12年前我搬到了东京
I moved to Tokyo 12 years ago.
医疗保健和辅助 日本政府都帮我们支付了
Medical care and helper, Japanese government pay for us and
我们支付10%左右 这取决于他们的薪水
we pay around 10 percent, it depends on their salary
补充百合子说的 每月都会有一个上限金额支付
To add to what Yuriko is saying, there’s a cap on the monthly amount you’d pay.
另外 如果你是低收入者 你会比高收入者付的少一些
Additionally, if you’re low income, you’d pay less than someone with a higher one
这种系统的设置对我有一个好处
I say a benefit for me in the way that the system is set up
就是不一定要被国家分配
is that it’s not necessarily distributed by the country,
和城市的一样高
as much as the through the city.
因此如果你住在一个城市并且已经注册
So if you’re living in a city and you’re registered with the city
并且你还付了城市的税收 你是有资格获得城市的服务
and you pay your city taxes then you’re eligible to receive the city services.
这就是他负责调剂的辅助时间
And so that’s who’s in charge of sort of dispensing the helper time.
和一些可访问性服务和东西 因此
And some of those accessibility services and stuff so…
即便我不是一个日本公民我依然可以
Even though I’m not a Japanese citizen I’m still able to
像日本公民或者市民一样接受这些服务
receive those things as a citizen, or, a resident of my city.
所以这里有更多的住宅而不是需要国籍
So it’s more residence then nationality.
它也可以通过取决于你住在哪个城市而改变
And it can change depending on which city you live in as well.
所以如果我搬到了一个不同的城市 但我显然还是属于城市的条件
So if i move to a different city then I’d obviously fall under that city’s situation.
我还是可以改变我接受的服务和东西
So that could change what services i receive and stuff so…
我们得到了专门为残疾人提供的助理服务
We get assistant services for people with disabilities.
它不同于专为老人提供的长期护理保险
It is different from the Long-term Care Insurance for the elderly.
助理服务的一部分就是派一个助手到你家为你服务
Part of the assistant service is a home helper service where a helper visits you at home.
助理服务会帮助你出去或者去医院等等 这些都是由政府资助的
There are helper services that aid in going out or going to a hospital and so on, which are subsidized by the government.
你接受服务的时间取决于你残疾的严重程度
The hours you receive depend on how severe your disability is.
取决于你的残疾有多严重和你的条件 你的好处也会随之改变
Depending on how bad your disability is and your condition, you benefits will change.
这解释起来很复杂 但是简而言之 它有不同的等级
It’s really complicated to explain, but to easily say it, there are different levels.
我得到的是专为严重残疾提供的家庭护理服务 它可以让你得到最大的支持
I get home care service for people with severe disabilities, which is pretty much the maximum support you can get.
为了获得我的服务 我向江户川办公室提出了申请
In order to get my benefits I applied to the Edogawa ward (city) office.
然后江户川办公室看了我的申请表决定我应该获得哪种程度的服务
Then the Edogawa ward office reviewed my application and decided how much benefits I would get.
我获得了一个月302小时的家庭护理服务
I get a 302 hours of home helper service a month.
我的名字是安达昭一 我是一名助手
My name is Shoichi Adachi. I’m a helper.
虽然我遇到的残疾人都能够自己做很多事
While the disabled people I met could do many things on their own,
但他们仍然需要助手的帮助
they all required aid from helpers.
我不能打开你的衣橱 是吗 对 我不能
I shouldn’t open your closet, should I? Right, I won’t!
请你帮我把它用微波炉加热一分钟好吗
Ah, could you microwave it for about 1 minute, please?
非常感谢
Thank you so much.
啊…太…棒了
Ahhh, Sooo good!
当我服务一个和我的价值观不同的人的时候 我会很小心
I’m really careful when I work with a person whose values aren’t the same as mine.
我会把我的价值观搁置一边 尽量站在对方的立场上
I try to think as if I were that person, putting my values aside.
我在这里就是要为我的客户提供帮助所以我必须专心致志
I’m here to support my client’s life, so that’s what I focus on.
我经常认为我在这里就是要帮助我的客户
I always remember I’m just here to help my client.
我自己可以打字 并且我也可以自己用轮椅走路
By myself I can type and I can handle a ride in my wheelchair
刷牙的时候用电动牙刷
and brush my teeth with an electric toothbrush.
其它活动我不能自己去做
Other activities I cannot do by myself.
当我去旅行时 我会和我的丈夫一起
When I travel I (go) with (my) husband.
但在家里我就需要一些助手
But in my house I aske some helper
来帮我刷碗 洗衣或者打扫家务
to help wash dishes or laundry or clean my house.
我知道的有三种主要的服务类型
The three main types of help that i saw provided
有需要助手帮助去洗手间或者更衣的
were for physical needs like assistance going to the washroom or getting dressed.
日常生活需要做饭和打扫家务的
Daily life needs like cooking food and cleaning.
还有对生活幸福需要的
And social well-being needs
比如出门旅游去和他人或者世界相互交流的
like traveling outside of the home to interact with others and the world.
我想知道如何提供帮助 但它是取决于个人
I asked how the help was provided and it turns out it depends on the individual
和公司提供的支持
and the company providing the support.
由于每个人的需求不同 所以要做一些他们接受的支持
Since every individual’s needs differed so did the support they received.
我给我的助手计划的任务是以每周为基础的
I plan my helper tasks on a weekly basis.
我的助手每天早上都过来帮我起床 去洗手间 帮我换衣服
My helper comes in the morning to help me get out of bed, go to the bathroom, and change my clothes.
然后是午饭时间 晚饭时间
Then there’s lunch time, dinner time,
清理 然后帮我上床睡觉
cleaning up, and putting me in bed.
我把一天分为早上 中午 晚上
I divide the day into morning, lunch, and dinner.
如果哪一天我要洗澡 我会让助手多待一会儿
On days that I take a bath, I’ll ask a helper to stay longer.
在周末我不用上班 所以我喜欢出门
On weekends, I’m off work , so I like to go out.
我会提前一个月计划我的助手换班
I will plan my helpers’ shifts 1 month in advance.
我能生活全靠我的助手
I am able to lead a life thanks to my helpers, though
尽管他们能做得只有一部分
there are limits on what they can do to help.
我不能要求他们去做我想做的事情
It’s not like I can ask them to do anything I want.
对于救助时间
Regarding hours of assistance,
我们已经问了江户川办公室好多年
we have been asking Edogawa ward office for so many years.
按理说你的残疾程度越严重 你的救助时间就越长
The more severe your disabilities are, the more assistance hours you need.
但是江户川办公室没能给我们那么多时间
However, Edogawa ward office can’t give us that many hours.
这是一个长期的问题我们必须要搞清楚
It’s a long term problem that we have to figure out.
即使有严重残疾 你也不能得到24-7助理服务
Even with severe disabilities, you can’t get assistant services 24-7.
我们想要更多的帮助
We’d like to have more help.
在拍摄纪录片的过程中 我并没有深刻认识到护理的重要性
Going into making the documentary I didn’t quite realize the amount of care needed.
所以我问乔西每天都有助手护理是什么感觉
So I asked Josh how it felt to have a helper with him for many hours of the day.
很明显有一个助手能帮我做许多事情
Having a helper helps me do a lot of things obviously.
但同时很高兴有自己的私人时间
But at the same time it’s nice to have personal time.
你知道的 不一定总是有人在身边
And you know, not necessarily always having someone beside you.
但问题就是因为有许多需要自己护理的事情 我又不能自已完成
But the problem is also because of there’s a lot of personal care things I can’t do on my own.
所以我能做的事情很有限
So I am limited by how long I can be on my own.
可以说是日常生活的五分之一
And so yeah it can be kind of a fifth wheel
因此很难和你的好友一起出去
so it can be difficult to go out with your personal friends.
并且有时周围还有其他人
and have another person around sometimes.
但同时 你知道的 如果我要去洗手间
But at the same time, you know, if I need to use the washroom,
我需要有个人在附近待着
I need to have that person somewhere nearby.
因此有时你需要有人和你一起并且让他在那等你
So sometimes you get people to come with you and just wait somewhere.
但是一些公司会派遣助手
But some companies that dispatch the helpers
他们会担心他们会从城市陷入麻烦如果
they’re worried that they might get in trouble from the city if
没有人在附近去帮助你
the person’s not nearby to help you.
所以他们不喜欢你告诉他们在远处等着
So they don’t like you to tell them to wait somewhere completely far off.
所以有时可能会对你的私人生活造成一些困难
So it can be a bit difficult for your personal life sometimes.
正如百合子说她的丈夫就是她的助手
As Yuriko said her husband acts as her helper
当她想出去或者做些日常活动比如购物的时候
when she wants to go out and do everyday activities like shopping.
她发现百货商店很方便轮椅进入
She finds department stores are very wheelchair accessible.
这是因为一些小型的还是古老家族经营的商店
This is because some of the small and older family-run stores,
被建于许多年前
that were built many years ago,
并不总是有相同的空间去容纳轮椅
don’t always have the same space to accommodate wheelchairs.
我们买点什么 番茄
What should we get? Tomatoes?
番茄和黄瓜
Tomatoes and cucumbers.
要多一点
I want more!
嗯…我们还买什么
Hmm… what should we get?
这一排最后一个怎么样 金枪鱼 中间的最后一个
What about the last one in this row? Tuna. The last one in the middle.
这是真的
This is real.
正如你在百货商店看到的 还有一些超市
As you can see in department stores, which often have supermarkets,
有许多空间容纳她的轮椅
there’s plenty of space for her wheelchair.
没错 那是捉鬼敢死队的主题曲
And yeah, that’s the Ghostbusters theme song!
在那边中间的部分
It’s over there in the middle section.
日本百货商店还有一个有趣之处
What’s also nice about Japanese department stores
就是他们经常有一个部分放入容易在低层找到的已经准备好的食物
is they often have a section of ready-to-go food which is found on the lower floor.
你能帮我拿一下这个吗 对 一个就好
Can you get this, please? Yes, one please.
尽管一些古老的建筑里没有这样的空间
While some older style buildings simply don’t have the space,
但是它们也会有一个像桥一样的小斜坡
some do have little ramps like this which help bridge the gap.
我出车祸到现在已经28年了
It was 28 years ago when I was in the accident,
那个时候我并不知道这种系统
and back then I didn’t know anything about the system at all.
因为我在家里和父母住在一起还有
Because I was living with parents at home and
住在一个康复中心 所以我不知道有这个系统
living in a care home center, I didn’t know about the system.
但自从我来到了东京并开始自己生活
But since I came to Tokyo and started to live on my own
我开始对这种护理系统充满了兴趣
I stared to get interested in learning the care system.
如果让我评价它
If I think about it,
我觉得这个系统已经改变了很多
the system has been a lot changed.
最大的变化就是能让你自己生活
The biggest change is that you can live on your own
在家里的帮助下
with the home help
还有助理服务
and assistant services.
谈论一下关于我们办公室的助理服务吧
Talking about our office’s helper service,
我们的和其他地方的服务完全不同
ours is very different from the ones at other places.
我们不叫它帮助 我们叫它支持
We don’t call it help. We call it support.
我们尊重每一个患有残疾的人和他/她想要的生活
We respect the person who has the disability and how he/she wants to live life
并且关注什么样的支持
and focus on what kind of support
是他/她想要的
he/she needs.
这就是我们的主要焦点
That is our main focus.
我觉得其他的助理服务办公室
I feel that other helper service offices
并没有关注残疾人想要什么
don’t really focus on what disabled people want.
所以他们帮助他们的客户总是认为他们需要什么 而不是客户说需要什么
So they help their clients with what they think they need, not what the client says they want.
最大的不同之处在于我们明白他们的需求(因为我们也是残疾人)
The big difference is we understand their needs (because we’re disabled to).
这是最大的不同
That’s the biggest difference.
钱?
Money?
我们提供服务 所以
We provide a service, so
我们对客户负责
we charge our clients.
我们并不以此牟利
We’re not doing this to making money though.
我们只是想对残疾人提供援助以至于让他们能自己生活
We want to support people with disabilities so that they can live on their own.
这就是我们的目的
That is our purpose.
乔西住在家里专门适应轮椅
Josh lives in a home specially adapted for wheelchairs.
实际上 整个公寓的设计都是无障碍的
Actually, the whole apartment is designed to be barrier-free.
日本的房子 但不仅仅是房子
Japanese houses, but not only houses,
还有许多建筑物和公司都设有玄关
also a lot of buildings and businesses have a genkan
我在这里按下按钮
I push a button here.
所以你曾经有过这种特殊的装置吗
So did you have to get that specially installed?
当然 城市帮我付了90%吧 我认为
Yeah, so the city, paid for I think about ninety percent of it.
所以在日本的大部分房子里 你可能会看到他们在格雷格的房子里
So in most houses in Japan, and you’ve probably seen them in Greg’s house,
有一个玄关在前 和外界有一步的分离
there’s a genkan at the front which is a step that sort of separates the outside
从房子里面看什么干净什么不干净
from the inside of the house and what’s clean what’s not clean
所以人们会在那里脱掉他们的拖鞋
so people will take off their slippers at that point.
但很显然对于坐轮椅的人来说是不容易通过的
But obviously it’s not very accessible for people in wheelchairs.
所以在我的公寓楼他们要做的是取消玄关的设置
So in my apartment building what they’ve done is made the genkan go away.
除了有一个实际存在的玄关那里还有一个
And so instead of having an actual genkan there’s just sort of a
分离器在地板里因此你可以说好的这是外部 这是内部
separator in the floor type so that you can say okay this is outside and this is inside.
所以人们可以在这里脱掉鞋子
So people take off their shoes there
这也是他们对我的公寓所做的改变之一
so it’s one of the adaptions they’ve made for my apartment.
我们已经在前面看到玄关和自动门了
So we’ve already seen the genkan and automatic door the front.
这里还有一对其他的东西对于我的公寓来说很特别
There’s a couple other things that are sort of unique to my apartment.
这个地板比其它地方的要好的多
The floor is a bit flatter than a lot of other places.
这里曾经是个门 但是我把门取了
There used to be a door here but I had taken out.
是一个滑动的门
It’s a sliding door.
那也是另外一件事了 在日本有许多地方的门都是要拉来的
That’s another thing as well, a lot of places in Japan they have doors that open by pulling,
但是很明显对于坐轮椅的人来说这太难了
but that’s obviously difficult to do in a wheelchair.
所以在我的公寓楼的许多地方 都是为残疾人设计的
So a lot of places in my apartment building , which is designed for people with disabilities,
滑动门
have sliding doors instead.
现在的我从不做饭 但是如果非得要做
Now I never ever cook, but if I ever was so inclined to,
水槽和煤气灶的下面他们已经全部切掉
Underneath the sink and the gas range they’ve cut everything away,
所以理论上我可以坐着轮椅进去
so I could pull in with the wheelchair, theoretically.
但是我已经把它塞满了垃圾和啤酒所以
But I’ve, ah, I have it filled up with garbage and beer instead so…
如果我们在这里
And if we head over here…
这是洗手间
(this) is the washroom area.
这个浴室比普通的要大一点并且它也有滑动的门
The bathroom is a bit bigger than normal, and also it’s got the sliding doors on it.
拿起并且使用牙刷 我能够得着水池和上面的一切东西
Pull right up and use the toothbrush and I can get at the sink and everything .
浴缸在这里 他们给我加了这些叫踏板的东西
And in the bathtub here, they’ve added these things called a sunoko.
就像一排篱笆平着放一样
Which sort of looks like a fence laid down on its side.
浴缸实际上也下降了五厘米左右
And the bathtub actually goes down about, maybe, five centimeters or so.
一般是正常的走进去 但是由于他们给我建了这些踏板
It would normally go in but they’ve built up these sunoko
所以我能坐着轮椅进去
so that i could drive right in with my wheelchair.
他们也有一些不同的手柄在里面
They’ve also got a number of different handles on stuff on the inside as well.
然后移动回到这里
And then moving back here…
-这是安达对吗?-对 这是我的助手安达
– This is Adachi-san, right? – Yeah this is my helper Adachi-san
这里是我的床
And over here I’ve got my bed and
它看起来像医院的病床 这样你可以举起脚之类的
it’s sort of like a hospital bed so you can lift up the feet and stuff like that .
这些都是城市帮我们支付 我的床也是其中的一部分
So the city help pay for the cost, part of the cost of my bed.
在床的旁边缠绕的
On the side of the bed in that sort of tangle of cords,
是对讲机 正常情况下它是在墙上
is the interphone and normally that is sort of on the side of the wall somewhere.
但是因为如果我在床上而对讲机在墙上 我是不能打开门
But because if I’m in bed, I can’t open the door if it’s on the wall
所以我把对讲机放在我的床的旁边
and so I was able to put the interphone next to my bed so
这样无论早上什么时候助手来了帮我起床 我都能给他们开门
whenever somebody comes in the morning to help me get out of bed then I can open the door.
曾经有一次我爸爸来看我
And then once when my dad was visiting
他去了当地的五金店
he went to the local hardware store
他买了一些木材 给我做了个踏板
and he bought some wood and he made a fence for me, ah sorry,
这个斜坡方便让我出去
the ramp to go outside.
这是我的宠物兔 乌莎 你出名了
This is my pet rabbit. Usha, you’re famous!
我从来没有这么喜欢这么想要一只兔子
I never particularly was like, oh, I really want to rabbit
其实我不想要
It was more that I didn’t want
一只狗因为我觉得我不能把它照顾得很好
a dog because I wouldn’t be able to take care of him well enough I didn’t think.
还有猫 我怕它有一天跑了我追不上它
And also a cat I was afraid that if he ran away I wouldn’t be able to chase after him.
所以养兔子是一件最简单的还能能培养感情的事
And so this is sort of the easiest thing to take care of that has a personality.
然后这里可能是我一天花时间待的最多的地方 电视机前面
And so this is where I spend too much time probably, in front of my TV.
这还是电脑 所以我
Which also has the computer there so I
要在这里工作或者娱乐
do a lot of my work there as well as just relaxing.
这张桌子是可调节可移动的
And I have this table that is adjustable and also movable and that you know
我可以用它吃饭或者把键盘和其它东西放上去 所以
I can use for dinner or for putting the keyboard and stuff like that so…
这一切都是为了适应
It’s all about adaptations.
在日本有群体之家 所以许多身患残疾的人会
So there are group homes in japan so people with disabilities will maybe
住在一起 并且那里有专门的员工来照顾他们
live in the same house and there would be staff that could take care of their needs
这些也是由政府在某种程度上补助的
And these will be subsidized by the government in some way.
但是可能他们管理比较规范化
And unfortunately that’s probably, they used to the norm,
以至于许多人都搬到大城市里单独去住
but a lot of people moving to independent living in the big cities
所以他们每天都会有助理过来照顾他们一段时间
So where they will have helpers come for a certain number of hours a day
然后他们做事情也会自由些
and they can do things more freely but
然而当你搬进乡村 很明显你全部都要依靠群体之家的员工
that’s obviously depending on staff and as you move out into the country
还有那里会有更少的人去帮助你
then there are fewer for people who can help.
所以在那里运行那些独立生活辅助的项目是不可行的
So it’s just not feasible to run some sort of independent living helping program.
所以人们要么搬到城市
So people either move in to the cities
要么他们住在当地的群体之家之类的
or they live in a local group home or something like that.
并且现在群体之家也出现在了城市里
And group homes do exist inside the city as well.
他们肯定也是来满足身患残疾的人的需求的
And so it probably, depending on the needs of the person with disability
如果他们遇到有关发展的挑战之类的
If they have developmental challenges or something like that or need
或者遇到一些需要密集护理的 那里就是他们要去的地方
some more intensive assistance then that would probably be where they go but
因为人们可能要靠他们的照顾而生活
otherwise people would maybe live on their kind of thing, so…
有一件事我很好奇
Something I was quite curious about
就是公众是如何对待残疾人的
was how the general public treated disabled people.
其中一个原因就是我曾经读到有关日本的残疾人被隐藏的文章
One of the reasons is that I used to read about Japan’s disabled being hidden away
并且当我开始在日本生活
And when I started living in Japan,
我不得不说 我并没有在外面看到尽可能多的残疾人
I’d have to say that I didn’t seem to see as many disabled people out and about
就像我在加拿大的时候
as I would in Canada.
我能看到的是在过去的几十年里日本发生了很多变化
What I found out, is a lot has changed in Japan over the past couple decades.
我认为在加拿大 残疾人更多的 长时间的活跃在社会里
I think in Canada people with disabilities were much more active in society for a longer time.
所以人们经常看到坐轮椅的人
So people are maybe more used to seeing people in wheelchairs.
12年前当我第一次来到日本
When i first came to visit Japan about 12 years ago,
那个时候在外面并没有看到许多坐轮椅的人
at that time there really weren’t as many people out in wheelchairs at the time.
所以我认为 当然是以一个外国人的身份
So I got, on top of being a foreigner of course,
我认为我是多余的 你知道的 看到有人坐在轮椅上
I got the extra, you know, looks of being somebody in a wheelchair.
并且我认为人们没有必要
And, your know, I think people were not necessarily…
我认为这是有趣的 还有可能鼓励人们我觉得
I think it’s very intriguing and maybe encourage people i think.
所以在那个时候我受到了许多眼神并且特殊的待遇让我觉得很奇怪
So at that time as I got a lot of looks and the sort of special treatment is kind of odd.
但是在过去的几年里 我认为这是一种好方法
But even in the past couple years, I’ve sort of, in a good way,
让你融入集体并且你知道的
sort of blended in with everybody else and you know it’s…
人们经常会在路上看身患残疾的人
people are more used to seeing people with disabilities out in the streets and in society.
所以我觉得每个人能够接受这样是件了不起的事情
And so I think everybody sort of gotten used to which is a great thing I think, so…
在美国他们知道女士优先
In US they know about ladies first.
并且他们照顾孩子或女士
And they care of child or lady.
但在日本他们是武士 崇尚武士文化
But in Japan they are samurai, samurai culture,
所以他们并不知道如何对待弱者
so they don’t know how to treat (a) weak person.
所以我认为日本人
So I think Japanese people
应该知道如何去帮助更多的弱者
should know how to support more weaker person.
所以我认为在加拿大 人们还是比较友善的
So I think in Canada, probably, people are a bit more upfront
他们会来到你面前问你是否需要帮助或者其它什么的
and they’ll come up to you ask if you need help and stuff like that.
然而在日本人们经常表现得很害羞
Whereas in Japan people can often be quite like shy.
并且 你知道它取决于所处的环境 但是有些人会发现
And, you know it depends on the situation, but maybe somebody might find that
人们其实不在意这类事情 但我认为并不是我想的这样
the people don’t care or something like that but I don’t think that’s the case I think
旁观者很清楚
the other person is very aware
一些事情他们是不能做的 他们会担心他们是否冒犯了你
of something but they don’t, they’re worried they might offend you or
或者他们真的很害羞因为你知道如果你不表示
or they’re quite shy because you know if you don’t
他们就不知道如何做出回应
they don’t know how to react maybe
可能就不知道你是需要帮助或者你不需要帮助
like if you need help or if you don’t help so,
我想也许你可能会发现
I think maybe you might find
在日本少了些帮助 但同时如果你又是一个外国人
less help in Japan, but at the same if you’re a foreigner,
你可能需要更多的帮助
Then you also might find more help.
所以我觉得它真的取决于所处的境况
So it really depends on a lot of case by case I think.
但是我认为大部分人
But for the most part I think people are
其实很想去帮助别人但不确定怎么帮是最好的
very eager to help but just not sure exactly what’s best so
可能他们只是困惑
Maybe they are just confused
所以他们是诚实的 日本人都是诚实的
And so they are honest, Japanese people are honest.
他们只是不知道如何对待如何去帮助残疾人
But they don’t know, just don’t know how to treat or how to support disabled people.
这里有专门为残疾人设立的学校
There are special school for disabled people.
所以他们不用去日常的学校
So they cannot go (to a) regular school.
他们把普通孩子和残疾的孩子分开了
So they’re separated between normal kids and disabled kids.
所以孩子就不知道如何帮助身患残疾的孩子
So kids don’t know how to support disabled kids
然后变成成年人 这是一个特殊的 让人不好意思的问题
And become adult. It’s very program, sorry problem.
所以这是一个
Yeah so that’s a
一个地域问题 我认为日本人需要的是更多的工作
an area where I think probably Japan needs to work a little bit more on.
这里有许多残疾人的独立学校
There are a lot more separate schools for people with disabilities.
在加拿大 在我成长的过程中就有这样的独立的学校
In Canada when I was growing up there had been separate schools,
但我的妈妈非常努力的工作就是为了确保让我拥有周围的一切
but my mom worked really hard to make sure that I was always included with everything.
所以当我去幼儿园的时候
And so when I went to kindergarten,
我去了普通学校
I went to a normal school and I
并且我和那里的孩子一样长大直到小学毕业然后是中学
grew up with the same kids up until elementary and then high school.
我也去了一个平常的学校
And so I attended a normal school and there were maybe,
并且在这里 有一个专门为残疾人设置的班级
in our area, there’s a class that was specially dedicated for people with disabilities
就是不能参加常规的活动
that maybe couldn’t go in with the regular stream
但他们依然和其他人一样在教学楼里学习
but they were still included in the same school building.
而很多时候在日本 直到现在
Whereas a lot of times in Japan, up until recently,
还有很多人 你知道的 他们要去独立学校
a lot of people have been, you know, they go to separate school.
有时不幸的是
And sometimes unfortunately,
仅仅是因为身体的残疾
it would be just because of physical disability not necessarily
所以就觉得没有必要去学习
to do with an ability to learn.
所以一些人有正常的学习能力
And so somebody with (a) normal ability to learn,
却要去那种学校
would be going to that school and would have to
并且不能受到和普通学校一样的教育
wouldn’t be getting the same education as at a regular school.
现在发生了变化 很明显这些做法受到了异议
Now things are changing, there are obviously exception to those things, but um…
我认为很多孩子更多的时候
I think a lot of times a lot of the kids are more in the sheltered kind of
是在庇护下生活 这种情况可能在日本或者在加拿大
life here than they are maybe in Japan, or sorry than in Canada.
最近在新闻中 因为那些
Recently on the news actually, for children with disabilities that are
可能5岁或者6岁身患残疾的儿童
maybe five or six years old
他们走路困难并且也没有到坐轮椅的年龄
but they have trouble walking and they’re not quite big enough for a wheelchair.
所以他们要用一些经过改造的特殊的推车
So they’ll use some sort of special adapted stroller.
但因为它并不是在日本那么受到认可
But because it’s not really something that was really recognized in Japan
他们不能享有和坐轮椅的人的同等的帮助
they wouldn’t get the same help as somebody in a wheelchair even though it was necessary
所以如果他们去车站
So if they go to a station,
车站的服务人员是不会帮他们放上斜坡踏板的
the station attendant wouldn’t help them with the slope or something like that.
并且他们会受到许多质疑的眼光 为什么这么大的孩子还要坐推车
And they’d get a lot of looks because why is this big kid in a stroller?
所以就做些小贴纸贴在轮椅推车上
So there’s been a campaign to make these little stickers to put on the stroller wheelchair.
去提高人们的意识
To raise awareness so…
人们出去融入社会的次数越来越多
People are getting out and more involved now but
但是还是有些方式我认为没有像加拿大那样进步
there are some ways I think it’s not as advanced or progressives as Canada is.
跟其他国家相比 日本人就像在服从命令
In comparison to other societies, Japanese like to follow rules
这是意味着日本是一个组织良好的国家
This means a well organized society
但是同时意味着人们很难会为了一些特殊情况而去变通规则
but at the same time it can mean it’s difficult for people to bend the rules for special cases.
我遇到过几次这种情况
And i’ve come across a couple times where
可能没有必要遵循规则
it’s maybe not necessarily following the rules but
但是如果他们让我做这个就好像是让我在享受
if they let me do this them I can enjoy
不管我想要享受的是什么 方式都是和其他人是一样的
whatever it is I’m trying to enjoy in the same manner as everybody else.
它只是一点点
but it’s just a little but
啊…你知道的 因为员工
ah, you know, because the staff
知道规则并且他们可能
know the rules and they’re maybe not
不会亲自做出决策
in a position to make the decision on their own
他们会试着犹豫但最后还是说不
they’ll just be hesitant to try and they’ll just say no instead.
比如我曾经去过一个火车博物馆
For example I went to a train museum
我想去看一个展示
and I wanted to look at this one display
一个专门为这些迷你火车或者其他东西的展示
where they’re having a show for these mini trains or something and
并且我想往展台靠近一点去看
I wanted to just go up to the display and look at it
但我被博物馆的员工制止了:不 不 坐轮椅的人只能在这里看
but i was told by the staff, no, no, people in wheelchairs watch from here.
然后我说:展示还没有开始
And I say, but the show hasn’t started yet.
我就是想去看看 看完就会回来 别担心
And so I just want to go look, I’ll come back, don’t worry.
是,是,不,但是你知道如果有火灾
And, yep, yep, nope, but you know if there’s a fire…
或者其他事故发生 你会挡着其他人的路
or something happens then you’ll get in the way of other people.
即使有许多空间 但还是很少有人在那里
And even if there’s the plenty of room and there’s barely anybody there
这就是那些所谓的规则
and it’s just those the rules and that person didn’t
让那些人觉得他们没有权利去说:啊,好吧 你可以过去
feel they had the authorities to say, ah, it’s ok, you can go.
你知道的
You know where as, maybe
像一些个人私有的地方
in places like where more individuality and
他们会承担更多的个人责任:没关系 你可以过去 我理解
taking a lot more personal responsibility they’d be like, ah, it’s ok, you can go for it, I understand .
在日本有时你遇到这样的情况
In Japan sometimes you come across like…
我认为我们不会这样做因为我们从来没有这样去做并且我们也不想尝试
I don’t think we can do that because we’ve never done that before and so we don’t want to try.
所以这对残疾人的不同残疾状况来说就会有点困难
Which can be a bit difficult for people with disabilities with different disabilities particularly.
在日本 仅仅因为居住条件
In Japan, just because of the living conditions of, you know, everybody,
没有足够的空间 特别是东京
There’s not a lot of space, especially in Tokyo.
所以有些曾经居住在北美那样的房子里的人
So maybe people who are used to North American sized buildings
可能会对这里商店的紧密度表示惊讶
might be surprised by the the compactness of stores here
并且有时会引发一些问题 假如你在轮椅上
and that can cause a bit of a problem sometimes if you’re in a wheelchair
你是不能通过的
because you just can’t get through.
如果你去一个全新的日式餐厅
If you go to a Japanese style restaurant in a brand new
办公大楼之类的
office building or something like that
他们经常会造一个手工阶梯在那里因为感觉很传统
they’ll often have a step that they’ve artificially built there because it feels traditional.
当你想要出去的时候会觉得有些痛苦
It can be a bit sad sometimes when you want to go out somewhere and
因为你不能进去了 即使这是一个新的建筑物并且你能进入
you can’t get in even though it’s a new building and you should be able to get in
当我被诊断出患有疾病
When I was diagnosed with my disease
在我的那一站没有电梯
there were no elevators at my station.
因此 我开始使用轮椅
So, but, (when) I began to use (a) wheelchair
当我26岁的时候 在2006年
when I was 26 years old, in 2006,
他们安装了电梯
they installed an elevator.
所以对我来说出去乘坐公共交通很方便
So it’s very good for me to go outside using public transportation.
并且对那些出门要坐轮椅的人来说也变得更容易了 它变得更接地气儿了
So it became easier to go outside for wheelchair users. It became accessible.
在2020年这里要举办奥运会 残奥会
And 2020 there will be held Olympics and Paralympics,
因此日本会变得更加平易近人
so Japan will be more accessible.
我觉得加拿大肯定有
Yeah i think that Canada definitely has an
一个非常进步的社会景象 我可以保证
image as being a very progressive country and I think it is for sure.
但日本 正在紧随其后
But Japan, while it was playing a bit of catch-up,
我觉得日本在很多方面都超过了加拿大
I think it’s even surpassed Canada now, in many ways.
比如 我能使用许多日本公民的服务
For example, I can use a lot of the Japanese services for
有个人护理的服务人员
having personal care attendants come.
实际上我得到的服务时间比在加拿大得到的更多
And i get actually more time than I was getting in Canada.
除此之外我想到的最重要的事情
In addition to that I think the biggest thing, for me anyways,
就是我住在加拿大很偏僻的一个地方
is I was living in the country in Canada out in the middle of nowhere
在那里如果你没有车 你就不能去任何地方
and if you don’t have a car then you can’t go anywhere.
那里的一切都要取决于你的交通工具
And everything depends on asking people for rides and
最重要的是如果你使用的是轮椅 你就不得不有一个可适应轮椅的车
on top of that if you use a wheelchair then you have to have an adapted vehicle which can cost
那要花费8万美元或者十万美元
maybe $80,000 or a hundred thousand dollars.
有时你从政府那里得到了补助
And sometimes you get money from the government but it’s only
但也仅仅是2万美元 剩下的还都是你自己付
maybe $20,000 or something like so you have to pay the rest yourself.
所以在那里你能做得非常有限
So you’re really limited in where you can go and everything.
当我来到日本 住在了一个大城市
Where as when I came to Japan, living in a big city,
有着专门为坐火车出行准备的令人难以置信的基础设施
with an incredible infrastructure for getting around in trains and such,
在这里它真的打开了我的世界
it’s really opened up a lot of
所以我也能自己去许多不同的地方
my world here and so I can go to so many different places by myself.
并且在这里过着充实的生活
And live a very full life here.
在日本有很多很好的设施
As much as there are great facilities in Japan,
了解它们如何更好地使用是一个挑战
knowing how to best access them can be a challenge
百合子认识到了这点并参加了一个谷歌影响挑战大赛
Yuriko recognized this and entered a Google Impact Challenge contest
在这次比赛中我得了大奖
I got grand prize from Google Impact Challenge,
是财政支持
so that is financial support.
我想开发一个专门为坐轮椅的人使用的app
I want to build new application, app, for wheelchair users.
这个想法是一个无障碍并且可通行的地图
The idea is a barrier free and accessible map
通过收集用户提交的数据来制定无障碍的路线和设施
which will be created by collecting user submitted data on barrier-free routes and facilities.
在这个项目中我学到了许多关于在日本 残疾人是如何生活的
In this project I learned a lot about what it’s like to live with a disability in Japan
还有地方政府的支持
and the government supports in place.
和20年前相比变化太大了
Much has changed in the past 20 years,
事实上 就在2016年 一项新的法律的出台消除了
and in fact, just in 2016, a new law to eliminate discrimination
人们对残疾人的偏见
against people with disabilities has been enacted.
一些人认为这条新的法律不会存在太久
Some have felt that the new law doesn’t go far enough.
但是我认为这就是一个朝着积极方向转变的一个标志
But i do think it’s a sign that changes are going in a positive direction.
身患残疾 住在日本 虽然不是完美的
Living in Japan with a disability is by no means perfect,
但是很高兴看到还有像乔西
but it’s good to see that the advocacy work of people like Josh,
百合子 土屋先生这样的人在做着宣传工作
Yuriko, and Tsuchiya-san are improving things.
当你从没有尝试过 你认为你不能做到 我们想要你挑战你自己 去尝试做一些自己不能做到的事
When you’ve never tried something before, you don’t think you can do it. We want you to challenge yourself and try things you can’t do.
那时你就会明白没有什么事情是很难做到的
You’ll then realize it’s not that hard to do,
并且再也没有之前不去尝试的理由
and there was no reason to have not tried before.
我们想让他们明白迈出一小步真的很重要
We want them to realize that making a small step is really important.
这就是我的想法
That’s what I think.
如果你不试着向前一小步
If you just don’t try taking a small step forward,
你会一件接一件的放弃
you’ll just give up on one thing after another.
我想和他们分享我们的经历
I want to share our experiences with them
并且继续改进我们的服务
and continue to improve our services.
在这里特别要感谢百合子 乔西 土屋先生和安达先生
I’d like to give special thanks to Yuriko, Josh, Tsuchiya-san, and Adachi-san
接受我们的访问
for letting me interview them.
同时也感谢阿加莎帮助我
Also thanks to Agatha for assisting me.
百合子在YouTube上有一系列视频
Yuriko has a great series on YouTube
关于她坐着轮椅环游日本以及环游全世界
about traveling around japan and the world in a wheelchair,
所以一定要去看看
so make sure to check it out!
乔西是”接近日本”的幕后工作者
Josh is the guy behind Accessible Japan,
这是一个英文网站 主要帮助残疾人了解日本
which is an English site that helps people with disabilities navigate Japan.
所以也一定要去看看
So make sure to check that out too!
感谢所有那些支持在Patreon上观看纪录片的人们
And thanks to all those who have supported these documentaries on Patreon.
一如既往地谢谢大家收看 我会在抓住你的另一方面
As always, thanks for watching, and I’ll catch you on the flip side!

发表评论

译制信息
视频概述
听录译者

收集自网络

翻译译者

MR.Jungle

审核员

自动通过审核

视频来源

https://www.youtube.com/watch?v=KKrLQDNuMpI

相关推荐