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Thread: “Traveling while disabled is hell”

  1. #1
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    Default “Traveling while disabled is hell”

    https://www.theguardian.com/commenti...hange-kindness

    The author has MS and describes her experiences in Glasgow.

    ANN
    There comes a time when silence is betrayal.- MLK

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  3. #2
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    Good article Ann. I got so unnerved at the thought of traveling that I just didn't want to do it anymore, and that was when I was less disabled than now. I got left twice without help to get to gates. This was after having requested it when I bought my ticket and reminding them when I got to airport. It was nerve racking. When all went well and help came as supposed to it was find, but when it didn't it was he--double hockey sticks.
    Virginia

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  5. #3
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    Well, let's see. I've travelled to the Philippines...where we spent 6 weeks. And in various places in Canada, including Vancouver, Montreal, Quebec, elsewhere. And Norway, 2 different times. And England. And Florida, California, Georgia. I've been on planes, trains, cabs, limosines, jitneys, ships, boats, sometimes all on the same trip. All on crutches and also a wheelchair. While people have been gruff, and acted as if they were being asked to do something "beyond their pay grade" -- I generally got where I wanted to go, and was helped with ramps, luggage, directions. So yes, it's a real challenge to travel. And I did a lot of pre-planning to try to ensure that everything was in place that I could get in place -- and yes, there were times, lots of times, when it didn't work out quite as planned. But I did it.

    So yes, it can be a challenge. But it's *worth doing*. And now, that it really isn't possible for me to travel anymore, I have all those wonderful memories....

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  7. #4
    Distinguished Community Member agate's Avatar
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    I admire anyone who travels as a disabled person. I've been to Chicago from WA state 3 times by plane while disabled, and to Portland and back from WA by train once, and that is the sum total of my travel in the last 38 years except for 3 moves (twice by plane, once by car). Sometimes there were long but unavoidable delays in airports. Wheelchair damaged by being tossed into the cargo hold. Wheelchair requested at airport wasn't there. Couldn't find my way around the airport. Couldn't find the washrooms. Tired and hungry but always remembered to bring food along so I wouldn't have to track down a place to buy food on top of having to track down everything else.

    I haven't tried planes since the much tighter security restrictions. It must be far more of a nightmare nowadays.

    I'm sure travel is worth it but I can see other parts of the world through TV, and that is another great invention, maybe second only to air conditioning.

    Travel is undoubtedly much easier if there is someone with you--to scout around, to be your eyes and ears and legs. If I ever have to travel again, I'd find someone to go with me even if I had to pay that person handsomely.

    I did figure out that with very very careful planning, the whole experience can be much easier.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Agate, the key to not getting bummed out and upset is definitely having someone with you, someone who doesn't mind stepping up and helping or getting you help. If a person is not too disabled to get around even if it takes longer they can do it alone. At my stage I would not try traveling again.
    Virginia

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    Having Peter w me definitely helps. I have not tried anything more challenging than the Boston to Detroit to Little Rock for Joy and back home via Atlanta. We’ve flown to Portland and had another trip to San Francisco that were long but doable.

    Peter has an upcoming work trip to Anchorage. We have been excited about this until we discovered that the shortest combo of flights was just over 10 hours. We got trapped in rush hour traffic in the spring and I was in spasms from my physiatrist exam. Not looking forward to a yen hour flight especially if I don’t end up in Hawaii or Europe.

    Last night, we looked at ways of breaking the trip up by stopping overnight at a half-way city to have a day to rest (for me) and explore for him. Maybe a different city on the way home.

    We gave up as the thought of two days of travel each way w each flight about 5 hours or more sunk in. I’ll skip Anchorage but I may go to New Orleans in November. Of the two, Ancourage was calling me.

    ANN
    Last edited by stillstANNding; 08-08-2018 at 11:08 AM.
    There comes a time when silence is betrayal.- MLK

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    We flew from Milwaukee to Alaska several times. The easiest was Milwaukee to Seattle, overnight in Seattle, then Seattle to Anchorage. We got nonstop flights on each leg - -it's much easier to just settle in to your airplane seat than it is to get on/off multiple times.
    ho
    Yes, it can be easier to travel with someone. But if the "someone" is my husband, there really isn't much difference. He is not comfortable speaking up, or speaking out. He'd rather just try to "figure it out" for himself, even if it means missing a connection. So it's up to me to demand service.

    But (and this is another issue I have with the article) I don't *ever* expect that "they" (porters, transportation staff, hotel staff, etc.) will know what I need. For example the woman in the article apparently expected that the person giving her directions would know that she couldn't see well enough to see that he was pointing. I have to TELL them -- specifically -- and repeatedly -- what I need, and when I need it. For example, I travelled from Chicago to Portland, Oregon by myself, on a train. I told them well before my destination that I needed a ramp (or some other means to get me off the train), needed assistance with my luggage, needed assistance to get from the side of the train into the terminal. Then a half hour before my destination I told them again. I told them explicitly how I needed assistance to get off the train (If there was a ramp, we needed to go backwards down the ramp in my chair.) Then when we got to Portland and -- yes! -- were met by 3 "sturdy" men to help, I told THEM explicitly what I needed, and how to do it. I didn't expect that they would know. I didn't assume that they would know. Maybe they did -- I didn't give them a chance to find out, and dump me on the pavement in the process.

    Another example: I travelled by myself on buses across Norway. Buses there are generally pretty accessible. But again, when I booked the route I told them explicitly that I would be travelling by myself, in a wheelchair, with luggage. That I would need assistance to get myself on to the bus and off, and help with my luggage, and help to get to the terminal. Again I reminded them when I boarded, reminded them before the stop where I was to get off. This was complicated when one bus broke down and we had to transfer to another bus...not to mention I know not a word of Norwegian (thankfully most everyone there speaks English).

    Flying is complicated because when you book a flight you have to be sure that the plane you're going to be travelling on pulls up to the terminal and has a "sky walk", so you won't have to be climbing stairs (assuming you can), or can't get on the plane at all. Once on a flight in Canada it turned out that the plane was NOT one of those which pulled up to the terminal...and the steps were there. So I found a maintenance man, explained my situation -- they brought out the freight platform -- it raises and lowers with a scissors jack mechanism to fit various heights on the plane -- strapped me down to the platform, raised me (in my chair) up to the door of the plane, and got me onto the plane that way (it landed at an airport with a sky walk). But again -- my husband just sort of threw up his hands and started to hyperventilate. I was the one who spoke up, took action.

    Alaska is SO worth the inconvenience! We mourn the fact that we intended to go again this year to celebrate our 50th, but now neither of us are healthy enough to consider it. If I were able to independently transfer to/from my chair I sure would try it -- now with both a colostomy and a catheter the bathroom issues are much easier...

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  15. #8
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    Thank you, intrepid Cat.

    ANN
    There comes a time when silence is betrayal.- MLK

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  17. #9
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    I lost my traveling companion and John simply does not, ever, travel. I too think it is so complicated now that the joy would be lost...but, with the right friend I could do it.
    When I want to travel within New England I hire a limousine. That works great as we know each other now. But, once I get someplace I am unable to explore.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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