Beth ends up sick AND a disability advocate in Japan

We are on the Shinkansen back to Tokyo or rather, I am, as long as I can last. Linda has left with the train passes, all the cash, the credit card and ironically, the bank card for the emergency US money I made by selling manga. But not a great deal of this is Linda’s fault, or Linda’s actions are exaggerated because though I have a “wheelchair space” in the First Class Green Car, this space is only, I kid not, 12 inches wide. Most conductors transfer me into another chair and then Linda folds over the chair with the oxygen on it and they keep it in the boarding area. They lock the brakes and at stations they change the side it is on so people can board on the other side.

You may wonder why people can’t just pass the 26 inch wide chair which there is plenty of room to do. That is because on JR trains there is a woman who pushes a cart as big as the aisle with things to sell like Bento lunches. And if the wheelchair is IN the wheelchair space that is not possible. This conductor however was not going to be placated until the Wheelchair was GONE.

See this actually starts with Linda and I having a fairly decent time around town (Kakunodate) going to see the cherry bark craftsmanship and samurai district. We arrived early to the train station as we do every day, not only for the JR people but also to buy lunches. We talked to the JR people and they said they would help me on and call Tokyo to have someone help the wheelchair off and we should go wait in the waiting room. Linda went off to buy the Bento lunches. And this is when Linda started acting strange, or rather, acting and not talking. She came back from the store with one lunch and when I asked about the other lunch, she just said, “We’ll eat less.” and then left. So as the room got more and more crowded, I guarded the luggage. She came back and said the room made her feel nauseous and that the toilet was all Japanese so she would wait for the train. After a couple minutes she left again, it was 19 minutes until the train left and usually the staff likes me out there 5-8 minutes before the train leaves. Well, 10 minutes came and went and no Linda. It was 8 minutes until the train to Tokyo and still no Linda. So I placed all the luggage and started to go look for her. I got to the door and she was outside. I said, “They are coming any minute!” and she came in. She said she found a western toilet and I asked if it helped any and she said no, but she was feeling better.

Not a minute later the JR guy to get me on the train arrives. His job is to GET me on the train – and that is it, so when Linda is getting our passes stamped….he rams her, with MY chair. We go out and this is one of these guys who walks just behind you and grabs your chair whenever he decides so I have no idea if he has control or not as we are inches from the side (trying to take control of the wheels when one of these guys is pushing is a good way to break a finger). We get there and he seems a little confused as to where exactly I am to wait. Also he has my least favourite “wheelchair ramp” which is two individual ramps with steel curl overs so if you have front individual footplates, as I do, they tend to get stuck or jammed.

I look at Linda and ask, “Are you alright” and she says she will be. Then I watch her and ask, “Are you okay,” and instead of answering, she pulls out a plastic bag and starts vomiting into it. FUCK. I pull out the only empty plastic bag and a bottle of water and hold them out to her but JR guy is insisting I move to another place, so I wheel there and he yells at me, which I interpret as “come back!” Meanwhile Linda has water and this bag of vomit and I am looking to JR guy and pointing to the bag and JR guy refuses to acknowledge it or do anything, so I get Linda to put the first bag into the second and she gets water and I ask if she can make it on board and she says yes and I tell her to go ahead and get rid of the bag.

In the meantime, JR guy has laid down the two “ramps” and is trying to shove me up them. This is despite the fact that THEY DON’T MATCH my wheelchair or wheels and there is a sound of metal tearing on metal. But he HAS to get me on board. I am screeching and trying to do a flip up of my casters and slightly panicked as one back wheel isn’t even ON the ramp. I am onboard somehow, Linda is gone and I get to meet conductor for JR I name Mr. Grumpy. Actually, his name is Mr. Fucking ASSHOLE who SHOULD be sentenced to living life in a wheelchair for a year in FUCKING inaccessible Japan. But let’s call him Mr. Grumpy instead. I lock my chair in. No, not good enough. I transfer into the train chair and take off the cushion and clothing guards (it was raining buckets in Kakunodate). No, not good enough. I am trying to figure out how to fold the back down which has made EVERY other conductor happy but I can’t find the cord, and then after finding it I can’t make it work. I am almost crying and I finally hook the cord on both sides and fold the chair down by RAMMING it with my head. No, not GOOD enough. Mr. Grumpy takes off my wheelchair backpack which has my oxygen on it. This car is a sauna. I am about ready to punch Mr. Grumpy and say, “Oxygen – OX – Y – GEN!” and he relents and lets me keep the bag by my chair but no, the chair is no good. He keeps making the “make thinner” motion with his hands as he wants to put it in the baggage section, where all OUR baggage is, behind our seat. So he moves ALL the baggage out of reach up a couple seats and then is trying to JAM a rigid wheelchair into the space which is too small for it. It is like watching someone try to jam your favourite cat into a box that is literally too small for it. Only, I NEED that wheelchair to get everywhere! I take off the legs of the chair and right now, my entire lower body is entirely covered with wheelchair parts. Which thankfully I can’t feel but my GOD, this is first class eh?

Nope, STILL not thin enough. Of course I cannot talk to Mr Grumpy and explain that this is MY LEGS he is trying to take apart and ram places and that I don’t take a hacksaw to him just because I don’t like how tall he is. It is this time that Linda shows up and Mr. Grumpy turns to her and makes the “thinner” motion. And what does Linda do? She TAKES OF THE WHEELS. So right now, I haven’t SEEN a wheelchair toilet in Kakunodate (actually I did, they were doing construction so that the ramp was not only inaccessible but built across – not just by one by several wooden planks. Linda is gone again. And Mr. Grumpy, happy at last shoves the folded over frame, without wheels, seat, legs or footrest behind my chair and leaves (not seen again). Linda I think has gone to brush her teeth and they come by to offer me free stuff, I order apple juice and as it arrives I am so overcome and frustrated that Linda cannot say three simple words, and no it is not, “I love you” but “I feel sick” instead I have a half second to try to take control only I can’t. She is somewhere, but I can’t go to her, we HAVE medicine for motion sickness, for upset stomach and bowels and I can’t give it to her or tell her to take it because a) it is NOT in my reach and b) I do not have a wheelchair, I have a wheel-less frame behind my seat! Linda arrives just as the apple juice does, she wants to talk so MOVES the apply juice to her seat, which is two forward. She is too ill to stand up and talk to me, so she sits down but soon disappears and that time and the next time she comes in for a minute or less I suggest medication, which she finally understands and takes the third time. Because she is vomiting so much I give her my Gatorade to drink instead of water. She has had NOTHING to eat today but bread. I can only hope it is altitude sickness as there seems no cause whatsoever.

Of course, the room is still super hot and all food and even the apple juice is out of reach and we are over 90 minutes on the train. Linda is in the first aid room lying down. However, I do not know at this point, a) How long until I will pee myself, my jeans and this seat. b) if Linda CAN physically be up enough to put together the chair, which I cannot do, as it requires manual dexterity and lifting I am incapable of and the conductors and train personnel see as “not their problems” and c) Can she get the five minutes to the hotel, when SHE has the map, the reservations, the phrase books, the dictionary, etc.

And d) is how long until I go into shock? I have been wearing the neckband which is soaked in cool water around my neck to help with my core but right now, my arms which are burning up are completely covered in goosebumps – which is usually a sign that I am fucked since my body will start shivering even though I am actually overheating. And it will send even more blood and heat to the core. This however is not the problem of JR rail. And is it that JR rail is taking care of Linda who is sick and has put me in a position of helplessness and distain which angers me? Partially. Obviously I would like Linda to be well, I would like to come up with “the answer” and help her and everything would be better and we could go take pictures of the cherry blossom festival in Tokyo tonight as we planned this morning. However, Linda cannot take care of herself and I cannot take care of her. She just returned and said she would stay with me as long as she could. How are you I asked?

“Well, when I sat up, I vomited again, just clear liquid this time”. She is visibly nauseous. Which is I suppose better than before when she said she was fine. I ask her for the juice and some food as it is now two hours after the train left and she does that and then I send her off to the first aid station as she cannot stand without weaving. Unfortunately, the train is fill to full and her luggage is ahead of me filling two seats of which she only has reservations for one. When the other passengers comes, how will explain to them to move the stuff over? I don’t know? When, in an hour, we start to arrive in Tokyo will I move all our stuff off the train much less reach all the parts of the wheelchair? How will the wheelchair be assembled? I don’t know. And as long as I do not block the path of the woman who pushes the JR cart, they do not care. Well, that is not true, they will show up and DEMAND that I be ready to disembark in 5 minutes or so when we arrive at Tokyo, the fact that my chair is in pieces and in different places is nothing to them.

I am tired today of not even being allow to assume the role of caregiver, the ability I DO have to moving from the luggage, getting things out and then going back and holding Linda’s hand because the JR people do not recognize that a wheelchair is a mobility device, that it is not an inconvenience or a choice or that I shouldn’t be here at all. They have taken away my mobility, my choice and my ability to assist the person I love when they are sick because they live in a world in which a wheelchair is simply something 14 inches TOO wide for the NEW and
TECH wonder world that is modern Japanese rail. So, that is strike two JR – the first was telling me yesterday to take another train on ANOTHER day because they decided in not knowing what to do regarding getting me to platform two to make that MY problem, or to make ME and my inability to walk or walk up and down flights of stairs like others the problem. And today, another strike for removing dignity basic to all humans, in a FIRST CLASS special high speed train car because I can’t stand up or turn sideways or because I use a rigid chair and thus, that option must be taken away from me, along with eating, pissing and the ability to take care of my own health. I have to go because I am starting to have my own health issues as my fingers are all blue, and my arms, though burning up, are shivering as I lose the ability to see in my right eye. Yes, I did have a good morning and yes, I believe Linda will bounce back tomorrow (Whether I can is another question) but FUCK YOU JR – as I have followed every artificial rule, telling you months, then weeks, then getting ALL my reservations in advance, then telling each station staff the day ahead AND arriving an hour before and it STILL isn’t enough, it STILL isn’t enough to treat my wheelchair AND me with respect. They seem to be doing just fine at taking care of the able bodied person however.

Postscript:

I dragged myself out of the chair and in extremis put part of the chair together, which allowed me to see Linda and take her some juice. However I was missing parts like the legs and clothing guards and such. I was kept going by anger, mostly after finding a disability law compliant sign on the seat indicating that a wheelchair should be locked down NEXT to chair.
The other thing was that though there are two wheelchair seating areas and a designated wheelchair bathroom on this hand map (also for legal compliance), in actuality it is labelled and used as the women’s washroom for three cars. Which meant, for example when I wheeled into it the wrong direction (unless I was planning a backflip dismount onto the toilet), I had to go to the embark/disembark area to turn around and by then I was “in line” behind three other women, one who was staggeringly drunk.

The conductor never arrived nor any train staff and we arrived at the station with the chair still in pieces. However the JR staff assigned to take me OFF the train was less concerned with that and I ended up off the train while Linda was still on with all luggage (except the computer and the oxygen, I carried off the computer bag with my TEETH). I convinced the person to stop taking us and also convinced them to take us to JR’s complaint office, on the assumption that in the second largest train station in Japan there would be such – Tokyo Central. After many floors and elevators we found a small two person office which was not sign posted once called, “Customer Service” – I explained what had happened, the train number, and car number and that the conductor had taken away my wheels.

The guy in the office was talking to a friend so the woman took down the complaint and translated it, I illustrated with pictures from my camera and told them about the “You must walk” from Nikko they day before. The woman was, “So then you WALK over the stairs?” I said no, I use a rigid chair, I do not WALK, I did not walk into this office, I did not walk on the train, I did not walk up the overpass. I dragged myself, thanks. And that people who use wheelchairs don’t really like people assuming that they can WALK whenever they please. “AHHHHHH” this was news to her.

“And this is extra large chair?” She asked.

“No,” I told her, “it is an extra SMALL chair, just for Japan.”

She disappeared for a LONG time only to reappear to say that they had told the story but that the conductor of the Skinkansen Train, they were unable to find.”

“Golly, doesn’t a person who drove your expensive train for three hours going missing worry you?” I said because having learned a bit about Japanese culture this was the EXACT response I was expecting. She could not admit JR had done anything wrong, thus the conductor could not be found. I tried to explain that many had told me NOT to come to Japan because it was not wheelchair accessible but I wanted to show they were wrong. However, in three days of train travel, there had been TWO problems, with 11 more days ahead. And I said, if I can do this then maybe someone in a power-chair can.

She had never heard of a power chair or an electrically driven wheelchair. In fact, Linda, who had recovered said with great passion, that no JR person had EVER heard of a rigid wheelchair.

This was a lot of vexing for naught so we continued to the hotel, the Keio, which was recommended, and greeted us with a) wheelchair ramps, b) signs for “the impaired” instead of anything from “those crippled” to “handicapped” as seen on JR lines” and meeting me at the customer desk, which was level to me, for check in instead of the regular desk. There was a full accessible room EXCEPT, the heating was insane – about 88-90+ degrees F. The person escorting us showed us the thermostat and we went to sleep.

Problem: the only air coming in was HOT, and while Linda was able to get up, I was not, I was in a fever and unable to move even with a cold cloth on my forehead. Linda talked to them and “Nothing could be done.” She then used one of the EMT cold “break” packs and held it to my chest, and even with that I couldn’t move or talk. After some cold water and more cold compresses I got into the chair and went downstairs. It turns out that not all the Keio is a sauna, ONLY the floor where the accessible rooms are. I however was in shock for the second time that day as all four limbs were trembling and spasming and I was red on one side and yellow on the other. I tried to point out that if I WANTED to go to the hospital, I would not first check into the Keio and have my heat intolerance put me into medical care. It was decided to move me up a few floors where the thermostat was working (we had been told the whole building was like this and NOTHING could be done – again, “Can’t make the company look bad.” - except a shivering, spasming wreck in a chair of the lobby looks worse). So they moved us, I was put into bed and recovered enough to begin the second stage (going to the bathroom for several hours with cramps) which allows me to finish this post and move on to happier things tomorrow, the real reasons we came to Japan. I only wish that other’s actions had not diminished our experience of Japan, and I do not like liars, particularly ones whose lies make me spend tired hours at 2-3 am on the toilet. But that is just me.

P.P.S. - Linda recovered by the end of the train trip and is in fine health again