Today was one of the coldest days of the year. Although the max temperature was supposedly 11degrees Celsius, but if you add the wind-chill factor it felt more like 6 or 7 degrees. There was not a single cloud in the sky to blanket the sun's warmth; even the concrete footpaths were exuding cold air. It was one of those days where you'd regret not having brought your gloves and woolen hats even under the soft rays of the sun.
As I was walking to the station to go for my lunch meeting I saw a bunch of people in wheel chairs handing out leaflets. My office is right in the middle of Tokyo near the government buildings so I encounter protestors quite frequently. I looked over towards the building I heard loud voices from: it was coming from the direction of the Ministry of Health, Labour, and Welfare, (aka. the"Ministry of Wealth Through Increased Labour and Cuts in Healthcare"), and also the Ministry of Environment -- both my nemeses. I'm usually skeptical about protestors, but that day I couldn't believe my eyes, for there were nearly 2,000 people -- some standing tall, some in wheel chairs, speaking through loudspeakers in front of the ministry building. Speaking up for their rights.
I asked one of the ladies handing out the leaflet what this protest was all about? Why are these people in wheel chairs protesting in front of the MHLW? Why are they out here on a cold winter's day?
We are protesting for our civil rights.
I asked her how long they were going to be demonstrating, for I really wanted to interview the people, the real people behind this protest. I wanted to listen to their voices and speak up on their behalf.
Sure, I'll introduce you to the secretary general of the Japan National Assembly of Disabled People's International (english version here). We will be here till about 6pm.
Wow! I would be honoured. Thank you, I will be back later. I *want* to hear your stories.
I later went back around 5pm to see if the protestors were still there. It was approaching dusk -- a time when you really suddenly realise that you need more than gloves, but the 2000+ protesters were there. Warming each other in comradeship; they had come together to unite and speak as one voice to stand up for what they believed in. They stood/sat frozen in their wheel chairs for nearly 10 hrs in the cold, speaking up for what they believed in: their own civil rights.
A two thousand person march...
I eventually found the lady who was going to introduce me to the secretary general. She led me through the crowds of protesters who were handing out leaflets and shouting at the ministry building. We eventually got to the centre. The brains, and the mastermind behind this gathering was a man in his mid/late 50s, with a strong posture, wearing slight glasses, and the only difference between him, and me,was that.... well, he was in a wheel chair.
This was my first encounter with Mr. Koji Onoue, the secretary general of the Japan Assembly of the DPI in Japan.
Mr. Onoue was happy to give me a brief interview immediately when I explained to him what my intentions were, and that I have a blog site that took up many causes. He was happy to oblige. We went into the MHLW building lobby area to move away from the loud crowds so that we can have a quiet chat. We exchanged business cards; never have I seen a business card that is set in both "visible" writing and also in Braille. I knew then that I was talking to someone who really was honest, open, and true about this whole protest.
Here's a brief excerpt from my interview:
DWR: So, Mr. Onoue, can you tell me the reason why you are out here protesting in front of the Ministry today? Please excuse my ignorance, for I am an able-bodied person, so I do not understand why you are here today.
Mr.O: Well, in that case, let me start from the beginning, he said as he drew a long, deep breath...
We, the physically and the mentally challenged of Japan, have been forcefully institutionalised up until 1970 (S.45). All persons deemed physically or mentally challenged, were forced to live in institutions, against our wills. Often we would be subjects to clinical, or surgical trials, against our wills for "advancement" in medicine...
(oh my god, sounds like a sci-fi fiction like the "The Chrysalids" or "One Flew Over the Cuckoo's Nest" )
DWR: S'cuse me sir. Are you telling me that the older generation of those with disabilities were forced to undergo surgical, or clinical trials against their wills?
Mr.O: Yes.
DWR: And were you yourself were subject to these these surgical procedures?
Mr.O: Yes. I was operated on 9 times without my consent. I was institutionalised. I couldn't protest. But I am one of the luckier ones. The women.... The women had to go through forced sterilisation. The government didn't want them to have children, just in case they had more "handicapped" children to deal with.
DWR:.... I'm sorry, I didn't know. Please, do go on.
Mr.O.: Well, in 1970 (S.45) the government began the "care in the community" program for people with disabilities -- so that we could live with the rest of society, become more independent, and not be locked up in some institution... but it was not until the 1990's that the government decided to come up with a subsidy system for us living in our own homes. As you can see some of us need helpers -- assistants -- to help us with our daily lives, and not all of us are wealthy enough to rely entirely upon our families to provide us with the care that we need.
DWR: Yes, I can understand. I recently wrote an article about trainee helpers. The government waited 20 years to come up with funding for you. Wow!
Mr.O: Yes, but the unfortunate thing is that the MHLW has not increased its annual budget for us because they allocated their budget based on the original projection of the numbers of the users back in the early 1990s, and they have not changed anything since... while in the meantime the number of claimants for the home-help requests have been on the rise. We are no longer shy to apply for what should be our basic rights: our right to live at home with our loved ones. Not go back to those institutions that teat us like guineapigs.
DWR: Yes I agree. The number of people needing help would increase, say due to accidents creating more people who need home help, or people developing illnesses that need home care, or you have a number of children born each year that need the benefits from the government.
Mr. O: Exacly. And since 2003 all the government has been doing is cutting our benenefits because they are strapped for cash. One of the examples is that we have had our "free home care" cut down to only 2 hours per day.
DWR: Two hours a day??? You can barely get a bath, go to the toilet (once) and get help on preparing one meal in those 2 hours -- and you live 24hrs a day like the rest of us! What is going on?
Mr.O: Oh that is just the tip of the iceberg... If you want additional help, under the "new law" that they are about to pass in Feb. next year we will have to foot 10% of our helpers bills which is a lot of money if you are living off benefits. For instance, a person eligible for state pensions, or benefits, receive on average 60,000yen (US$576) per month. If that person goes to a rehabilitation centre to "work", i.e. be economically active, they are charged 15,000yen (US$144) per month for "lunch" and a further 15,000yen (US$144) a month for the "helpers fees" -- so we are talking a total of 30,000yen (US$288) per month expenditure for these people.
DWR: This is madness! What about the people who have severe difficulties?
Mr.O: Well, they get more money from the government, about 80,000yen (US$768) per month, but because of their disabilities they usually have to pay around 40,000yen (US$384) per month.
DWR: Hang on, let me do the maths here. Are you saying that 50% of your "state benefits" goes on home care, or some other type of care?
Mr.O: Yes.
(Oh my god. If half of my monthly income went towards my "care" what am I to do? How can I live? What about rent, utilities, food, transport... how can I live??)
Mr. O sees my thoughts. He smiles and says: "Do you know the ironic thing? Those that are labeled as disabled but go to "work" in these special day-care centres, get paid less than 5000yen, and yet they charge us 15,000yen (US$144) for our care.
DWR: Are you telling me that you pay more than what you earn?
Mr.O: Yes. For they treat us as cheap labour. We are looked down as inferior labourers....
(This is unbelievable. What is going on?)
Mr.O: The government has now been drafting a bill through parliament that they took less than 2 or 3 debates, and they are going to push it through sometime next February. It will pass like the rest of the acts that are related to us.... This is not the first time. And it makes us angry because they don't discuss with us, the stakeholders, about OUR future. They are deciding upon our future without even listening to our voice....
DWR: Yes, I understand. And guess what? It's holiday season, and while everyone is on holiday they forget your cause, and *BOOM* next year, your fate has been decided, right?
Mr.O: (Sad grin) Yes... we have seen it far too many times....
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"Kono kuni wa Minshyushyugi de wa nai. " (This is not a true democratic country) -- Mr. Koji Onoue, Secretary General, Japan Assembly of DPI
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(I agree.)
DWR: So, Mr. O., I see that you are in a wheelchair. I noticed that many stations are not exactly "Barrier Free". How did you and your colleagues get to Kasumigaseki station today?
Mr.O: Well, the Ministry of Health, Labour, and Welfare has a direct passage from the underground station linked by a lift, others had to ask for assistance at other train stations. The train station that I started from, Shin-Ochanomizu, has only an escalaor, which is not exactly negotiable by yourself if you are in a 150kg electric wheel chair so I had a bit of assistance there, but otherwise I was OK.
(yes, I have seen many people in wheelchairs going down escalators with an enterage of 5 station employees!!)
To be honest with you, these new proposed laws that the government is trying to pass through gives us only one of two alternatives: we either go back to our parents who are rich enough to go support us in our ailing age, or to go back to the institutions that will perform surgical and clinical trials against our wills. This is why we stand out here yesterday, today, and tomorrow to fight our cause. We are fed up. We are humans. We deserve the right to be treated the same as anybody walking up and down the steps of Kasumigaseki Station... We want to go places on our own, by our own way.
DWR: What about housing? If 50% of your income goes to home help, what happenes to where you live? Obviously you need "barrier free" housing?
Mr.O: Yes. Unfortunately the government does not build housing projects for those like us, or the elderly, who need "barrier free homes", so in effect we have to rely on the private sector to provide us with the housing that we need.
(Oh my god. More money that these people need. They are falling straight through our social security net!!)
DWR: Mr.O, thank you very much for your time and telling me why you are here. I can see that you are busy, so I won't take up anymore of your time. Thank you indeed. My heart is with you, and I hope your voice gets heard by the civil servants leaving right now (it was 5:15pm). And I will send you my article when I finish it.
Mr. O. (smiling) I hope you get to write what you want. What you see. I look forward to your article.
DWR: My final comment to you, MrO.,I recently wrote an article on trainee helpers. I found out through them that by loosing one's "site" can you only appreciate your gift of vision. Perhaps those that are drafting your laws should sit in a wheel chair ALL day, to see what it's like from the other side of the fence.
He smiled as if to say. Oh, so you do know... good for you!!
And with that, Mr. O was back on the picket lines with his fellow warriors, speaking up for his cause.
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Mr. Onoue is one of the smartest, and the most clued-up people that I have met in my life. He is no revolutionary in any radical means, but he is more of a cerebral, and a peaceful fighter of his rights and freedom -- just like Martin Luther King Jr. His people have moved from a life of institutionalisation to one that of more humane: care/living in the community.... but even that is about to be threatened, restricted, even taken away from them. Onoue san and the 2,000 men and women marched for their rights. They were not petitioning for all the illegal surgical proceedures, or the forced sterilisations that was performed on them to be abolished, for these items were in their past, albeilt a very painful passage in their movements through their dark history of internment and institutionalisation. They have moved on. Right now all they want is a bright future, after all, these people, these highly intelligent, motivated people were prepared to be out in force for 3 days in one of the coldest days to change this country...
Tomorrow, Onoue san and the 2,000 warriors will be there, probably around 8:30am before the civil servants who will arrive at the Ministry building around 9am. And Onoue san will probably be there, protesting up until 6pm, an hour after the civil servants leave for their comfortable, state provided, cheap housing not worrying about having 50% of their income disappear to "home care". The same civil servants that are drafting the new laws that holds the fate of those like Onoue san, and the 2,000 protesters.... and beyond.
Strange how life looks different from the other side of the fence, huh?
I believe, however, that there will be changes. Onoue san and the other disabled people of Japan have come a long way: they came out of the dark, forced internment up to the late 1960's, to where they are today -- out on the streets, with their families, their loved ones. Together with the people that care...
Unfortunately Japan's laws on treating people with disabilities are far behind other "developed countries". There is no law that mandates the accessibility to all public buildings in Japan, although a recent "TV drama" depicting a young woman who was disabled in an accident has raised some public awareness on the plight of those bound to wheelchairs. But it is not only those that are in wheel chairs, for there are an estimated 5 million "disabled people" of which nearly 2million are those with learning difficulties.
I did volunteer work with people with learning difficulties when I was 17. I loved my role, and I know that everyone there enjoyed being part of society, and being a part of our economic system. Our "Labour laws" have some vague, ambiguous clauses saying something about private companies with more than 300 employees to hire at least 1.6 % to 1.8% who are disabled in their work place... sorry, dear readers, I can do the maths. Where am I going to find 4.8 persons or 5.4 persons? Or does someone in a wheelchair, or someone with an IQ of a 7 year old count as a 0.4 or 0.8 of a person? Sorry, I don't buy that, especially having an intelligent conversation with all those helped me on that march that day....
Disabled people are people. They are not just numbers.
People like Mr. Onoue have been treated like how "disabled" and "mentally affected" people were treated in the 19th Century in Europe; Mr. Onoue himself had been forced to undergo 9 surgical procedures against his will, and countless more tests. There are a group of women who are petitioning the Japanese government asking for an investigation and an apology into forced sterilisation against them between 1949 to 1992 . Our government has neighther investigated it, nor appologiesed for it.
But for the likes of Onoue-san, it's not an apology for what was done to him, is that he seeks. He and his fellow other people seek stability, seek a promise from the government that he voted for to protect him.
For he has no one else...
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Onoue san, and the rest of the his men will protest outside the ministry aroundd 8:30am before the civil servants who decide their fate arrive at the ministry at 9am, and will still be there at past 6pm... one after they leave at 5pm. Onoue san and his comrades will keep fighting on... throughout their lives they have 10001+ more obstacles than me -- and they have cleared it. I think that they can manage one or two more than me, for they are determined, strong Warriors on Wheels
(Post Script: I have had to do some extensive research on this topic. Thank you to all those that helped me on this project, supported me thru my drunken sleepless nights, and thank you most of all to Mr. Onoue for giving me his time. Honto Ni Arigato Gozaimasita. I hope I have done you justice.
source list:
* all currency conversions done though "oanda" or the median bank conversion online. I'm sorry if there is a slight difference when you convert into your currency. )
You can visit Onoue san and the membres of the DPI Japan and DPI international to find out about their activites locally, on line. If you are interested in making a contribution, or making a mark, please contact them directly. I know they will be more than happy to respond... just as they did for me!
DWR
3 comments:
When I first read this post I was shocked... How aweful this happens. I cannot believe that Japan would institutinoalize its disable. And all the way up until the 1970! How rude.
So I do not understand how the government can be so thoughtless on the subject. Surely one member of Diet (is that correct?) would have had a loved one with a disablity and know of their hardships. Thus how could they allow such rules to be pass in by its own job? That is mind boggling really. OK so I think I would call in the U.N. Really, I would at leas look into it. They have rules and standards that govern how people should be treated. I am not sure if they can do anything at all. But maybe just by bringing it to their attention would help? The more support the Warriors get the better right!
I do wish them well, and hope the government in Japan grows a heart sometime soon. They are just tossing a side kids, disable people, and kittens. What is going on in their minds? (OK they are not throwing away cats, but maybe it was them?)
O, Mr.Onoue and his group have already been down that avenue. At lot more than what I have been able to dig up in less than a week. The UN declared its first year for disabled persons, and have been holding an annual symposium since... but as my "orange" friend says "nothing changes"...
But that is not true, for it is the likes of Mr. Onoue who have changed the history of people with disabilities. They are the true instigators of peaceful change. I hope they get their word in before this shitty law gets past....
I am a mere "Kataribe": a story teller to make the world aware of the plights of those Warriors... neither more, no less. I am not strong, nor am an actvist.... but I see their plight, and I see that is has to be told just like the invisible childreｎ, the Burakumin, the disabled peole... and in general, the undergroud of the Wa (peace)and Bi 詫び錆び
I'm just a story teller.... and my recent "sell out" has torn me from inside... posings to continue..)
A good place to start action plans for those reading this post will be to contact the DPI directly, and ask what issues they have in their local and state or local government regarding the people who are deemed "diabled" in one form or another. I hope to keep in touch with the members of the DPI and speak up for their rights, to the best of my abilities, while return to my original writing style -- the Kataribe -- withought all the technical, finanical or emotional pressures on me which were getting me down latetly.
"Shavasana": Death, and a time for a new begining.
I shall enter Shavasana for a little while know, for I am physically and mentally exhausted with all these changes..
And all I wante to do was write.....
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