After proposing a couple of panels for this year's Netroots Nation, and having the proposal for a panel on “Torture in American Prisons” go to the finals but not ultimately be chosen, I didn't think it was in plan for me to attend. Then, a couple of weeks before, a possibility arrived through Frugal Granny and a couple of other Kossacks to whom I owe a great debt. Thank you, all of you, who made this happen. It ended up being the conference at which everything came together; at which I learned the most and made the most contacts who will help me move my anti-torture work forward. As one of the speakers said at my second panel, “Always say 'Yes'.” Or, as I put it, “Always listen to the whispers.”
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
My journey began with a 4:30am cab ride from my home in Ottawa, and to the Greyhound station, a two hour bus ride to Montreal, and then an Amtrak ride to New York, a six hour layover, then the final ride to Providence with the lovely and talented Pootie Queen, Tricia. All told, it took 26 hours to get there.
Now you may ask, “Why would you spend 26 hours getting there when you could have flown in much less time?” The answer lies in the expense of buying a plane ticket that close to the flight. It would have been three times the price, and I had the time and a lack of money, so I made the decision. I have travelled by train before, and enjoyed it, but I haven't spent so much time on a train since I was six and my family moved back to BC from Ontario and spent a week on the train going across the country. For those of you who don't know, I have lost 40-50% of my hearing in both ears, so I use hearing aids, and have osteoporosis in both hips and osteoarthritis in both knees, so I use a walker, all of which have become part of my life since the trip when I was a child. In spite of that, I was looking forward to being on the train and being able to relax. I did get some of that, but Amtrak made it much more difficult that it needed to be, and so did members of the New York Police Department.
I should also say that when I booked the Amtrak ticket I had my aide (who helps me with housework and phone calls that I cannot make) tell them that I had multiple disabilities, and was given a disability discount.
When I arrived at the Amtrak/VIA station in Montreal, I was in a complete panic, because we had gotten stuck in massive traffic and I thought the train had left ten minutes before we arrived. It turned out the train was not due to depart for fifteen minutes and a very helpful attendant helped me take my luggage down to the train.
A word about the luggage: It is easier for me to deal with several small bags than two or three large bags, because I can hang them off the handle bars of the walker, except for the one larger rolling suitcase, so I had four small bags hanging off my handle bars, a rolling briefcase containing my laptop on the seat of my walker, and my clothes suitcase I was rolling behind me. The baggage attendant too most of those. Together, other than the clothes suitcase, they did not add up to the weight limit that Amtrak imposes on the second bag you are allowed to bring.
After being settled into a seat and my ticket taken, I realized that one of the Amtrak personnel had taken my walker and put it what turned out to be at the other end of the car. That was the FIRST huge problem, because I was going to have to get up and walk during my trip, to get at least one meal and to use the washroom, as the train would be erratically moving, and if I fell, I would break one or both of my hips. I should also say that Amtrak has seats specifically designated as for those with disabiilities, but for some reason I was not given one of those seats, which would have allowed me to have my walker right there where I need it.
After my ticket my taken, the conductor disappeared. Except for a swift visit during the stop for the border, I didn't really see him for most of the rest of the trip. I am used to flying, where the flight attendants come by every so often to make sure everything is okay, so if you have a question you can get answers fairly quickly. There are also call buttons in case you need an attendant right away. There are no such buttons on Amtrak, and no way to safely find out where a conductor is if you have a mobility disability. When the conductor did come, he did not stop to listen to what I was trying to say, and instead mumbled a reply and continued on about what he was doing. Not having a real way for someone, much less someone with a disability, to contact a conductor easily, is the SECOND huge problem.
When I was finally able to talk to a conductor, and then a supervisor, to explain my problem, they agreed and moved my walker to where I could more easily get to it, but I still had to walk some feet to get to it, which could have lead to my falling given the erratic and violent movement of the train. I was still not reseated to one the seats for those with disabilities.
During the entire trip, the engineer was making announcements, but I couldn't understand more than a couple of words he was saying, in part because of the quality of his speech (mumbling, slurring) , in part because he at times swallowed the microphone, and in part because of my hearing, and there was no one official to ask what he said.
When I arrived in New York, none of the baggage handlers were on the platform to help me with my luggage, which I expected given that they had been told I would need help. SIGH ! So it took me half an hour to schlep my stuff up to the main station area. That is the THIRD huge problem. It took me a bit to even find the elevators because of inadequate signage. The escalators were close and readily apparent, the elevators, not so much. That is the FOURTH huge problem.
When I got to the waiting area with all my stuff, I asked the attendant if they would watch my belongings while I went to get food, because it was past dinner time and I am diabetic so I needed to eat. He said yes, and I went to find food. Note to self: remember to exchange money before you leave Canada ... I am an idiot some days ! I ordered my food and handed the woman the money, only to have her say it was pretty. That I had been an idiot then struck me with full force. Fortunately, a woman in the station agreed to exchange enough money to allow me to pay for my food.
After waiting for six hours, the train from DC to Providence arrived and I had the honour and pleasure to meet the Pootie Queen/Tricia. When we arrived in Providence, we shared a cab to the main hotel and had breakfast and settled into the conference. THANK YOU, TRICIA !
It was a delight to renew in person hugs with Scottie, ramara, loggersbrat, hayden, Cedwyn, Common Sense Mainer, AdamB, TexDem, jnhobbs, and many, many others, and to at long last share in person hugs with peregrine kate, SaraR, winglion, triciawyse, House164, Horace, MBNYC, and many, many others, and as I have said, it was my most productive gathering of the three I have attended.
Getting home was another adventure: Tricia and I left on the same train, but ended up in different cars, very sadly :( We were lucky enough to have the assistance of a baggage handler in bringing our stuff down to the platform. I was determined to be seated in one of the seats for those with disabilities, and was, with my walker right there. The trip to New York went well.
It was when I arrived in New York that everything got really interesting, in the Chinese sense. Once again, there was no one to help with my bags, and no signs as to where the elevators up to the waiting area were. This time, it took me almost an hour to get everything upstairs. SIGH ! Those were the FIFTH and SIXTH huge problems.
When I got up to the waiting area, I asked the attendant where to find the manager of the station, because I needed to complain about not having help with my bags. He pointed to where the manager would be. I put my bags down in the area behind him, where I had put them on my trip to Providence, and asked him if he would watch them while I went and complained, and while I went and got food, because of my diabetes. (I should say, I had nuts and stuff like that, but needed a real meal.) He didn't reply. I repeated myself a couple of times but got no response, so I headed off to complain. I got about five or ten feet away when I heard some loud calling behind me (a fluke, because of the ambient noise and my hearing aids).
It was a police officer telling me I couldn't leave my bags where I had. As I tried to explain to her about what I was doing and why, she kept telling me to calm down, that I was yelling. Every time I tried to explain to her that I have a hearing disability which means I talk more loudly than most people, and that there was a lot of ambient noise which meant I was even louder, because I needed to hear myself talk, she would interrupt and tell me to calm down and stop yelling. I also tried to explain to her about my diabetes and that I needed to eat, but she didn't want to hear that either. Finally, she went and got her supervisor, who also kept telling me to stop yelling and calm down, and kept interrupting me. He was getting more and more angry, and on the point of arresting me, when I whispered, “I have a hearing disability.”. He stopped and calmed down. He was still sarcastically abusive, but at least he was going to arrest me. He offered to wait while I went and got food, but in a sarcastic tone that made it clear he thought I was being a pain in his butt, so I declined. Being almost arrested because of my hearing disability is the SIXTH huge problem.
(I should say that I think if I had been profoundly deaf, it might have been easier, because when someone starts signing, people understand they are deaf, and accommodations need to made, although, of course not every profoundly deaf person speaks sign. Like using a walker as opposed to a wheelchair, people don't quite understand what it means as far as how to react or that accommodations are necessary or what they might be.)
After the officers went off to take care of other business, I approached the waiting area attendant again, and asked him to get in touch with the station manager. He ignored me, again. I went away for a few minutes and then came back and asked him if he had called the station manager. He told me to stop yelling at him. Eventually, he got the first officer again. When I explained what I had been attempting to get him to do, and that she and her supervisor had told me I couldn't leave my bags, she eventually went and spoke with the attendant and he called the station manager was the only one in this whole scenario who actually listen to me and helped. He arranged for help with my baggage down to the platform when it was time; he apologized for the baggage guys not seeing me when I arrived; he told the attendant that he was wrong for not talking with me, and he explained how to make it more sure that none of this would happen again. He said that Amtrak needed to put more clear instructions on the computer regarding my need for help; that there was only a general disability instruction to meet the train. Apparently, my aide needed to be more clear. The rest of the trip was long but uneventful.
In retrospect, I would go through it all again, because of how wonderful Netroots Nation was and is, and how much it helped me with my work. It was all worth it.
In the future, I will make sure that there are specific instructions put on my ticket detailing the help I need. If someone in authority accuses me of yelling, I will take one of my aids out of my ear, so they can see that I have a hearing disability. I will remember to exchange money BEFORE I cross the border LOL
Love and Hugs,
Heather