Saturday, April 17, 2010

Wheelchair World

I’ve been using a wheelchair for six weeks now.  And if I thought before this that I had an understanding of what it’s like for people who use them, I was way out of line.

In the wonderful comic strip For Better or For Worse, there is a teacher who uses a wheelchair.  She meets a man, falls in love, and plans to get married.  When one of her students asks her how she knew this was the right man for her, she says that when they first met, he sat down to talk to her.

I so get that now.  I have sometimes wondered if my dogs, very small ones, get sore necks from looking up at people all the time.  I don’t know if they do or not, but I do know that my neck gets a workout.

Lots of people stop to chat, which is great.  It’s nice to know people care.  Sometimes they just want a quick update on how I’m doing, sometimes they have time for a bit of conversation.  I usually enjoy the attention, and most of them are interesting people to talk to.  Some of them have boarded the ship more recently, and they often ask me what happened.  Sometimes this seems a bit intrusive, but usually they are genuinely curious, in a good way.  The way they ask sometimes reminds me of when I was pregnant, and complete strangers would feel perfectly comfortable asking me about it and even touching my big belly.  I guess when someone is different in a way, but not too different, people feel less of a barrier exists between private and public.  I’m not sure, but it’s interesting.

The world looks different from this lower level.  It reminds me a bit of being a child, or of a museum exhibit I once saw in which furniture and other common household items were all huge.  Climbing on to a chair and sitting with my feet dnagling, because they didn’t reach the floor, was fun, helping visitors to rediscover the child within.

In a wheelchair, though, it isn’t always fun.  My feet do reach the ground, but when I go to the cafeteria restaurant I am not high enough to see what food is available.  When I go in a store, on board or on shore, the display cases are too high for me to get more than a sideways look at what’s in them, which usually isn’t enough to tell what anything is.   Some aisles or sidewalks are too narrow, and some sidewalks don’t have ramps at the corners.  I can’t reach some things, clothes hanging on hooks, some light switches, books on a higher shelf in the library.  My ankle has improved enough that I can often stand up on one foot to see or reach things, but it’s still a special effort.

And maybe being short adds to how everyone seems to believe that I am totally incapable of doing anything for myself.  I know that for the most part, people genuinely want to be helpful, but I’d rather wheel myself than have someone I don’t know well push me somewhere.  I know how far a normal chair has to be for me to comfortably and safely get myself from wheelchair to it, and which brake to set on the wheelchair so I’ll be able to reach it when I need to get moving again.  The one thing I can’t do is carry a plate of food or a drink to a table, and the stewards who work in the various restaurants are always ready to help.  Why, though, if I wheel myself into the dining room, does one of the servers, or even the maitre’d feel that they must push me to my table?

There are dangers, too, caused by the inattention of others, although this is rarely deliberate.  I’d never noticed before how often people step backwards while talking to someone, without looking behind them.  Or they stretch out their legs under a table and, since my bad leg still doesn’t bend well at the knee, kick my bad foot.  Or they are walking down the middle of a hall, and don’t think to move to one side to make room for my chair, which is wider than I am.  And the number of people who text while walking through a crowd, without looking at all where they are going, is phenomenal, and common in every port I’ve been in since breaking my ankle.  And, even if people are looking where they are going, they are looking at their face level, not down lower.  All this is perfectly normal behavior, but it takes on a whole new facet from a wheelchair.

I’ve encountered, in the past, a person in a wheelchair who became annoyed when I asked if she wanted me to hold a door open for her.  At the time I was a little offended.  Now, I understand.

Using a wheelchair removes so much independence and control from your life.  I want to hang on to every little bit I can.  I’ve worked at wheeling myself around, and while my triceps are still not at the level where I can wheel laps to get an actual workout, they now rarely begin to ache when I wheel myself around the ship.  And even if they do begin to hurt, I’d still rather push myself, to make them stronger.

The wheelchair is my friend, because I can get around the ship, and some places on shore, with it.  It’s faster than using a walker, and crutches are still considered by the doctors to be unsafe.  I can still teach writing, do my own writing, come up with discussion questions for the book club, sew, feed myself, take a shower, etc.  So, of course, I start feeling horribly guilty when I whine about the limitations I experience, and about what I have to miss at the ports we visit.  There are many people on board who use wheelchairs or motorized scooters.  They have been and will be, in their chairs for months and years.  I will use mine for only a few weeks.

There’s a fraternity of wheelchair users, too.  We always smile at each other, or nod in passing.  Sometimes we stop to speak.  We notice each other, and I suspect that most of them don’t get noticed by many mobile people.  I’m a bit of a different type of user, since so many people saw my fall or heard about it.  My leg is obviously in a cast, and I work on board, so lots of people know me, or know about me.  Through the book club and the writing classes I’ve worked with at least a couple hundred people, and even if I don’t remember all their names or faces, they know me.  I suspect, though, that most people in wheelchairs do not get asked how they are doing, or even if they are enjoying the cruise or what they did on the last shore day, which is what most people ask each other all the time.

Maybe mobile people feel uncomfortable with people in wheelchairs, or people with any sort of disability.  Maybe, like me, they feel guilty for what they have that the other person doesn’t.  Maybe, just because the person in the chair isn’t at face level, the mobile person honestly doesn’t see them.  I think most people know in principle that a person who uses a wheelchair is still a person, but it’s difficult to treat them as if they’re no different.

I’m the same person still.  I know this, even if others don’t treat me the same.  I understand, I really do.  Having been on both sides of the wheelchair issue, I am lucky, because once I can leave my chair behind (and not attached to my behind) I hope that I can use my newfound understanding to continue to realize that people are people, no matter how different they might appear.


I wrote the above yesterday.  Today I decided to do an experiment, and accept help whenever it was offered.  I allowed my trivia team to move my chair to where they thought was the best place for me to get into it, and to watch while I transferred from the place I usually sit during the game into the chair, because they worry that if I make the transfer with no one around, I could fall and reinjure my ankle.  Usually I explain that I’m trying to be as independent as possible, and so tell them I prefer to do it all myself.

While seated in the library, reading, one of the book club members asked if I wanted anything to eat or drink.  Normally I would have said I didn’t need anything, but I actually was a bit hungry, so she went to check out the snack place in the library, told me what there was, and carried a plate to me.

After book club, one of the members stopped to chat with me.  When we finished talking, it looked as if I could be trapped inside the circle of chairs we’d used for the group discussion.  I thought I could get through, but I might have had to push one or two of the chairs aside for the wheelchair to fit through the gap.  I waited while the person I’d been talking to moved several chairs, so that there was plenty of space.

I went for supper alone, as Melissa was otherwise occupied, and as soon as the stewards in the cafeteria restaurant spotted me, I permitted three of them to help, one to push me past the foods so I could see what there was, and he even read out the little signs for me, so I’d know what there was and the signs, while they actually aren’t to high for me to see them, could have been.  He then asked what I wanted and wheeled me to a table.  He joked about it being the best table in the house, but it was by the window, and not the first and easiest table to reach.  Two other stewards then brought my food and a glass of water.

And you know what?  It actually felt kind of good that all these people wanted to help me.  Yes, it does make me feel more helpless than I’d like to feel, but accepting help from other people is not something that comes easily to me.  Trust doesn’t often come easily to me, either.  Letting down my guard today resulted in a positive experience.  I felt a little less alone and more a part of the human community.  And it’s kind of nice to know that just as I can give to others, it can feel good to allow others to give something to me.

1 comment:

  1. "And it’s kind of nice to know that just as I can give to others, it can feel good to allow others to give something to me."

    And it feels good to *them* too, so yes, they're giving to you but you're also giving to them! What a lovely, loving circle, really.