Tuesday, August 21, 2012

Observations from a "Pushed" Girl.... 

For the past several weeks, I have been watching with interest a television show on the Sundance Channel called "Push Girls". It features women confined to wheelchairs who are still able to lead active and glamorous lives (one is a dancer, one is a model, one is a personal trainer, and one is considering competitive swimming). One subject that inevitably comes up is dealing with people who have no clue how to act around those who are wheelchair-bound.

I am fortunate enough to be able to walk, but that ability is quite limited. If I go further than the length of a city block or two without rest, my autoimmune fatigue will  become so severe I simply cannot take another step. I once had to be practically carried by my husband when this happened to me in the middle of a grocery store. The last straw was when I almost missed my flight at an airport after I came close to fainting halfway down a concourse. In 2005, I became a part-time wheelchair user whenever I needed to travel further than my legs would take me.

I recently got to take a short vacation during which I used my wheelchair three days in a row. While doing so, I thought about the Push Girls and realized that I am in the unique position of being both in the walking and rolling worlds. I cannot propel my own chair, though, due to arthritis and weakness in my hands and intolerance of repetitive activity, so my husband must do this for me. Consider me a "pushed" girl.

Thought I might provide some general information/reminders regarding wheelchairs to those are fully able-bodied and then some suggestions to those who might be trying a wheelchair for the first time.

For those who walk:

1. Don't judge. It will not always be obvious why someone is in the chair, and glaring at them or making snide comments is usually unnecessary. You never know - you may find yourself in your own wheelchair someday hearing people demanding bluntly what's supposed to be wrong with you.

2. Don't ignore. While you might be doing this thinking that it's a better solution than staring, by pretending that the person in the wheelchair isn't there at all, you might be missing out on an opportunity to meet someone great. When my husband pushes my chair, people sometimes assume that I cannot communicate, and talk to my husband about me without glancing at me at all, even though I am looking right at them and smiling at them. That is insulting.

3. Watch where you're going. This has become a real problem since smart phones have become so popular. I have had people walk right into the side of my wheelchair, so engrossed were they in texting. And perhaps this isn't common knowledge, but people in wheelchairs often don't have their feet straight down under them; non-customized chairs have footrests that protrude quite a distance, and if you have large feet like I do (size 10!), they end up way out in front of the chair, making them prime targets for absent-minded walkers to trip over them. I was at a stand-up comedy venue during my vacation with my chair at the end of a row replacing one of the usual seats, and within the space of ten minutes, three people had crashed into my feet, and two ran into the back of the wheelchair. That is extremely painful for some of us.

4. Share the space. Give people in wheelchairs the same consideration that you ought to be giving everyone else. I sometimes find myself being out-raced for an elevator by people who are pushing strollers. Your destination is no more important than mine. When a line has formed, don't cut in front of someone in a wheelchair just because they are sitting down and you think they won't mind waiting longer. And if you see a person in a wheelchair taking a photograph, don't intentionally walk into their shot. That happens to me a lot. And whatever you do, keep your vehicle out of the handicapped parking spaces and grids unless you are handicapped or are assisting someone who is.

5. Realize a person whose wheelchair is being pushed can't stop on a dime. In loud crowded places, my husband can't always hear me ask him to stop the chair, and I cannot see behind me for acknowledgment that he heard me. Also, my husband doesn't always see that my feet are too close to the person ahead of me. This can create some awkward situations. During my trip, I was behind a woman who was walking quickly to pass me and then once in front of me stopped suddenly. I moved my feet out of the way, but the foot rest on the wheelchair nicked the woman's bare ankle. She shrieked in pain, and although I apologized profusely, she began screaming profanities at me under the impression that I had done this intentionally. Then the man she was with advanced on me, and for a second, I thought there might be a fist fight right there in the Mall of America. Seeing that no amount of apologizing was doing any good, my husband quickly steered the chair into an opening in the crowd, and fortunately, we weren't followed. So please know that people in pushed chairs aren't intentionally playing bumper cars with you.

6. Help out when it is obvious someone is struggling. Most of the time, people in wheelchairs, or the person pushing them, get along quite capably. But sometimes there are roadblocks. The automatic door opener might not work. A store might have too narrow an aisle and something gets caught on a wheel. An elevator might have one of those old-fashioned gates that you have to hold open to get in or out. A sidewalk or ramp might be so steep that the footrests on the chair jam against it. Or that metal strip in a doorway might be too high to easily push the chair over it. Sometimes just holding the door open can be a great help to the person who is temporarily stuck. If you're not sure whether someone wants your assistance, just ask.

For wheelchair newbies:

1. Try before you buy. Insurance doesn't always pay for a wheelchair unless a doctor certifies that you meet particular requirements. And sometimes you might not be certain yourself whether you need one. Six months after the incident of stranding myself in an airport, I was invited to a three-day convention. I was concerned that I would only have enough energy for a few hours total, so as an experiment, I rented a wheelchair for the weekend. In my case, sitting in the chair instead of walking allowed me to participate in the convention for up to five hours on each of the three days, a vast improvement. With that knowledge, I was able to work with the doctor to get the proper paperwork to acquire my own wheelchair. If you only need a chair on rare occasions, such as in exceptionally large airports or superstores, you can generally get by with what they have on hand, if they are not all in use.

2. If you decide to own one, personalize it. There are two reasons for doing this. One is that most non-customized wheelchairs look pretty much the same: navy blue seat, back and armrests; metal footrests; black plastic handle covers. Unless you are in it full-time, it will be easy to get it confused with other chairs should you need to stow it on an airplane or use it in a hospital. I have had my chair lost not once but twice: once by an airline, and once by a hospital. The hospital never did find mine and had to replace it, unfortunately with a cheaper less comfortable model. So when I got my new chair, I decided to make it hard to miss: I put hot pink duct tape on the wheel rims and my name in silver permanent marker on all detachable pieces. Since then, it has never been misplaced. The other reason you might want to decorate your wheelchair is that it can make a potentially depressing piece of equipment a little more fun. People come up to me and tell me they like my pink wheels.

3. Get comfy. If you have chronic pain and/or extreme fatigue, make it as easy on yourself as you can. A baseball stadium seat cushion can make long stretches of sitting a little more bearable. And even though you won't be walking on them, you might want to wear closed-toe shoes to protect your toes from the backs of elevators and from the people who might trip over your feet. I also find comfortable clothes to be less exhausting for some reason.

4. Welcome to the world of short people. The world can look very different from a sitting position. A line can seem endless because you can't see past the people standing in front of you. Countertops in shops and restaurants are so high you might not be able to make eye contact with the employees or be able to reach a credit card scanner or a level surface to write a check. Guardrails at places like the zoo are often right at your eye level, making it a challenge to take photographs or even see the animals. On the plus side, kids in strollers seem to like having grown-ups face-to-face with them; I get lots of waves and smiles from children. Others in wheelchairs and scooters will often give at least a nod of encouragement, and some will strike up conversations while you're killing time waiting for an elevator or a car to arrive.

5. Be patient. Because you're sitting lower and require more physical space to get through a crowd, you may find yourself waiting longer to get from point A to point B. Allow plenty of extra time when going to appointments, shows and airports. You might have to use a special entrance, go far out of your way to find an elevator or ramp, or have to go through the "special screening" security line at the airport. At a general admission venue, you may need to be placed in a special area before everyone else is seated; otherwise, if you're late and end up in the back, whenever people stand, you won't be able to see anything. Venues with reserved seating will often have wheelchair spaces available with no one in front of you if you book early enough. Airlines like to board wheelchair passengers first, sometimes as much as 45 minutes before the rest of the airplane. You'll also need extra time at the airport to arrange for your wheelchair to be stowed under the plane.

6. There will be gawkers. Don't let this deter you. During my vacation, there was one particular woman who regarded me with disgust, staring pointedly at my perfectly healthy-looking legs (I was wearing basketball shorts). When she looked up at my face, I flashed her a toothy grin, which startled her at first, and then she appeared embarrassed. I always choose to smile at that those who stare because a certain number of them realize they are being rude and then smile back. And even when I don't win any friends, I do no harm by being pleasant.

7. Be assertive when necessary. If you come across unsafe conditions, store aisles too narrow to navigate, malfunctioning automatic doors, people parking on the handicapped grid blocking access to vehicle doors, or flagrant discrimination by a business, by all means speak up, not just for yourself, but on behalf of anyone else in a wheelchair who may come along. Throwing a temper tantrum may get you ignored, but if you look people directly in the eye and speak with an air of calm authority, you are more likely to be taken seriously. Ask for a manager or a police officer, fill out paperwork, write a letter, whatever is appropriate for the situation.

8. Think of the wheelchair as just another mode of transportation. Some people with chronic illness who would benefit from using a wheelchair refuse to do so out of guilt or embarrassment. They see it as a visible sign of defeat or an invitation for pity. It is just a chair with wheels. If it enables you to do more than you could without it, use it proudly.

9. You are not a baggage cart. If you use a wheelchair because of significant pain or fatigue, travel lightly. Loading up your arms and lap with heavy items your family or friends want you to hold for them gets uncomfortable and tiring pretty fast. One thing you can do is get a bag that attaches to the back of your chair. I use one to store a jacket, snacks, drinking water, or even in place of a purse if it is going to be a long day.

10. Acknowledge kindness. When others go out of their way to help you out, be sure to thank them. Positive feedback will encourage them to be kind to others as well. People have assisted me in getting my wheelchair over non-accessible curbs, have retrieved items off the top shelf in stores, and I've even had doors held open for me by kids who couldn't be older than nine or ten.

So whether you belong to the walking or rolling world or spend part-time in each, common courtesy will get you a long way toward where you want to go. Push on.

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