People, Chairs, and Wisdom

I am proud to be an advisor and occasional contributor to CAPTIVATING!, an inclusive online magazine. I wrote this for the May, 2017 issue and is used with permission. The format here is a bit different.

This is a composite of 3 photos. A large photo on the left shows George sitting on a bench in a park. He is wearing sunglasses and has one foot sitting on the seat of his wheelchair. The 2 small photos show his natural titanium wheelchair and a close up of the light weight wheels.

A newbie to life on wheels, he had his world under control that afternoon. In a narrow hallway, he was approaching the exit when a man emerged from the nethermost region behind his chair, grabbed the handles, lifted the chair up, and spun him around. “That’s better,” as he went out the door. Great. How do I open the door?

Never again did my wheelchairs have handles that anyone can grab. They fold down nicely out of harm’s way. That’s not all I’ve learned over decades of rolling.

Mobility Awareness

Let’s take a lighthearted look at personal boundaries, types of wheelchairs you encounter, wheelchair vs scooter, and how to bind someone to a wheelchair.

I cannot imagine that anyone reading CAPTIVATING! would ever do what the man did to me. So just sit back and smile as I share a few of my personal encounters in the Twilight Zone of wheeling. 

  • She approaches from the back. Did you know that a person using a wheelchair has absolutely no vision of what is behind them? She puts her hands over your eyes, and says, “Guess who.” I’m startled and my glasses are now smeared. It is the counterpart of asking a person who is blind, “Do you know who I am?” Have you ever said, “No, and I don’t care?”
  • As he stands beside me, he rests his hand on the back of my chair. I am not a sofa. My wheelchair is a prosthetic body that substitutes for a back and legs that don’t work. And that ubiquitous little chair back is what is supporting my vertebrae and is keeping my balance. 
  • Three or four people are talking. They are standing up. “I’m way down here, y’all.” Can you please look down sometimes or sit down if possible? Thank you, kindly.
  • We’ve all had this one. “And what would he like to drink?” Ask that, and my wife will reply, “How should I know? Why don’t you ask him?

Scooters, Wheelchairs, and Grandaddy Barndollar

Wheelchairs come is all shapes, sizes, and colors. There are push rims and electric motors, carbon fiber beauties and chrome clunkers, titanium and aluminum. I thought you’d like a brief look into Who’s Who. George is sitting in a state-of-the-art power wheelchair. He is in front of a large fountain. He has blonde hair, a striped shirt, jeans, and blue Converse shoes. One leg is crossed over the other.

  • Meet Chrome Clunker, which is often heavy gauge aluminum painted black and might not actually be chrome anymore. This monster weighs in at 40-60 lbs. (19-27 kg). They are the darling of insurance companies and often make their appearance in medical type settings. My first chair weighed 65 lbs. Thumbs down on that.
  • Full time users need the custom chairs. These are smaller. Much lighter! If you look closely you’ll notice the wheels are bicycle wheels and tires, and are cambered in about 4 degrees at the top. The very first one was made of bicycle parts. Every aspect of these beauties is custom, even the distance between the wheel rims and the frame. They are made of carbon fiber, titanium, or light weight aluminum alloy. I have titanium now, and my chair weighs 16 pounds. From 65 lbs to 16 lbs. Think of the difference this makes in my life. More importantly, in my wife’s life! It is less for her to lift and gives me energy that I can use to help around the house.
  • Power chairs are just that. Electric motors. Heavy. They range from mail order to custom. The price can vary from a run down Fiat to a new BMW. And the pricey ones are not all that rare, I might add.

Scooters, or mobility scooters, depending on where you live, are the bane of wheelchair users. We often get lumped into the same category, but the difference is mind boggling. The keynote speaker at a Multiple Sclerosis seminar described the difference this way. “If you can walk, the scooter might be right for you. If you cannot walk, your life will be better with a wheelchair.”

How do you bind someone to a wheelchair?

My Grandaddy Barndollar, back in Polk Township, Indiana, says that the best way to make someone wheelchair bound is to use duct tape. He says rope is old fashioned.

We still read in the press about someone being “wheelchair bound.” “Confined to a wheelchair” is another of their favorites. When people hear and read this, the stereotype lives on. I was over at a local theme park a few days ago. I saw several others using wheelchairs, and not one had been tied up with duct tape. Nor rope. Nor string. We were eating pizza or indulging in a delicious cupcake exactly like everyone else. Maybe somewhere along the line, we broke free of the duct tape and are no longer bound or confined. Now, how do we convince the press?

Another bit of Grandaddy Barndollar’s wisdom is that the basic thing we need to know about life is that people are people. We are not our wheelchairs or canes or space age prosthetics, just nice people living life a bit differently. Enjoy your life to the fullest, however you choose to do it.

Mobility Awareness Month is observed in May and was started by the National Mobility Dealers Association (NMEDA) in 2001. I was pleased to see that the State of Florida has mentioned it on their website and now includes “wheelchairs, scooters, canes, and prosthetic devices.” Inclusion is growing.

As always, thank you for stopping by and spending your time with me. Time is often our most difficult thing to manage. Please know that your time here is noted and appreciated.

PD: Main picture is a collage of 3 photos. In the large photo on the left George is sitting on a bench in a park. He is wearing sunglasses and has his foot in the seat of his wheelchair. The 2nd photo shows George in a state-of-the-art power wheelchair. One leg is crossed over the other. He has blond hair and is wearing sunglasses, a striped shirt, jeans, and Converse shoes.

Directing our own show – take 2

This is a revised version of a post from earlier in the week. It did not seem to generate much enthusiasm, and I took it down. Several people have encouraged me to re-post it. Perhaps this time I will express myself better. Thanks to all!

Out and about

George is in his wheelchair, at home, with shopping bags from Skechers, Nautica and a brilliant green bag. He has blond hair, wire rimmed glasses with an orangish tine, a blue T-shirt with white stripes, and he has removed his shoes.
As I share some thoughts with you on a warm, Sunday afternoon, I am sitting on my lanai. In Florida that is a part of the house under roof but open and screened. It is quiet and peaceful. But we don’t live only at home. We go out, and we interact with other people.

Those of us with a visible disability, or our family and friends, know that people look at us. I’ve become used to looks and stares, but it took time. They are going to look. People will naturally look at anyone or anything unusual. What happens, though, when it comes time for us to interact with them?

Our audience is watching

Those of us who use wheelchairs, and I’ve learned white canes also, seem to come under some kind of scrutiny. I’ve read that people in service and retail are often, sadly, apprehensive. They don’t know what to expect or what to do. Hence, the Just Say Hi campaign.

As we approach someone, we become the director of our own personal play. Do we look friendly? Do we look clean? Do we look alert? It is to our benefit to put people at ease.

Some tips I’ve learned

  • Adaptive equipment needs to be kept clean. It is an extension of ourselves.
  • Bling is good. My wheelchair is natural titanium, a silver gray. When it’s clean, it looks spiffy. I added bright blue tires and translucent blue casters. A gentleman in Saint Lucia recently told me that the sun through my casters made them positively glow.
  • Dress for the occasion, and wear what works for us. In the first picture I’d been shopping. In every store we went in I was welcomed and treated nicely. Obviously, from the load of goodies. Clothes need to fit and colors coordinate.
  • Smile and say Hi. Just Say Hi goes both ways, though if we can’t see the person well, we might not want to intrude.

Two guys in wheelchairs

George is sitting on the balcony of a cruise ship taking a photo with a small camera. He has rimless glasses with a gray tint. He is wearing a bright green polo shirt.On a recent cruise, as people were starting to board the ship, I heard a greeter say on her radio, “There are two guys in wheelchairs down here. The guy going by me now looks like he can handle things nicely.” Sandy and I smiled.

Thank you for stopping by. I’d very much like to hear your thoughts on this and if I’ve been of any encouragement to you.

Picture descriptions: In the top photo George is in his chair, loaded with shopping bags. He has medium length blond hair, almost round wire glasses with reddish-orange lenses, a blue shirt with narrow, white stripes, white short pants, and has removed his shoes. In the second picture George is taking a photo from his ship cabin’s balcony with a small camera after boarding. He is sitting up straight and is wearing small, rimless glasses with a gray tint and a bright green polo shirt.

25 years later

George is stretched out on the sofa. He has blond hair and glasses with an orangish tint. He is wearing a black, Mickey and friends sweater with white snowflakes, black pants, black headphones, and he is barefooted.

At first I blamed it on the new shoes, the fall in the mall and the second fall later in the day. It didn’t seem right, though, as they were an exact replacement of the ones I loved. It was my introduction to MS. Later came the ice storm and a more serious fall. Finally after exhaustive tests with lots of E’s in their names and 24 vials of blood, we met with my neurologist.

There was no drama, no tension. He told us what we already knew. The MS is progressive, and there is too much spinal cord damage for you to walk again.

After a struggle, MS put an end to practicing optometry, though I never lost the love and try to stay current. I’ve been a disabled parent and a licensed swim official. I volunteered at the hospital where I edited the volunteers’ newsletter. Then one day I called the National MS Society for information and was soon a Peer Counselor.

So I’ve officially been rolling for 25 years. Somewhere along the way I learned Rock your disability! It was a life changer. If I have a message it would be that going through a progressive disease is, at times, agonizing. A few years ago my neurologist managed to sort out the MS from the injury. That explains things that are going on now, but it doesn’t change my resolve – or yours. I know my followers, and you are strong. And kind.

Thank you for your support, and this is probably the last you’ll hear of my Paraversary. Twenty-five is a big enough number, and I’ve long run out of fingers and toes. It’s time to quit counting and roll on to the next challenge.

Thank you for stopping by and for indulging me whilst I look on some emotional times. Thanks to Sandy and Cliff for their unwavering support and the sacrifices they have made to keep me mobile. I’m blessed more than what I could possibly deserve.

Photo: George is stretched out, on his side, on the sofa. He has blond hair and glasses with an orangish tint. He is wearing a black, Mickey and friends sweater, black pants, black headphones, and he is barefooted.

Better times

It is an old photo that I’d found, taken in the 1950’s in London. This reminds me of a quieter time, people feeling safe. It also reminds me of a time in my life when I felt vulnerable, criticized. There is no utopia, neither now nor in the past. It is a reminder to accept our blessings and know that we have a future as individuals and together.

To those of you in the cold and snow, please continue to be vigilant and safe. I understand and care.

Thank you for reading as I ramble through life on wheels. As you can see, it’s not all about wheels, but more about life.

Picture is an old black and white street scene taken on a bridge in London. There are only a few people, walking on a snow packed sidewalk. There is a black car piled high with snow and a double decker bus in the background.

IKEA Day

On Sunday afternoon we went to IKEA. What to expect? How would it be different? If you wanted to hear what is the same, we’d be here all day. The similarity was indeed fascinating.

Kaohsiung’s IKEA is downtown and doesn’t have the outside signage I am used to in Orlando. Parking is in a 2 level underground garage. Once inside, I felt right at home. Same layout, same merchandise, same signs – only in Taiwanese with prices in NT. Conversion is easy, and they correspond right on with the US.
Most interesting was the food court. The most popular food item? Swedish meatballs with mashed potatoes. I was told I that is the most popular the world over. Menu? Exactly the same. The drinking glasses here are more formal.

The store is twice the size of Orlando’s and crowded. The people tended to be younger with small children up through pre-teens. Despite the congestion everyone was polite. No one bumped me, and no one stepped in front. I didn’t run over a single person. (Okay, I never do anyway.😎)

A good afternoon with lunch and people watching! Something for us all to remember…Halfway around the world, despite languages and cultures we are very much the same.

Thank you for reading. Comments are always welcome. I’m getting a bit behind in responding, so please bare with me. I shall spare you an entry on Costco. It’s nearly identical to the US, including English.

Picture is Sandy with her long red hair shining, and she is in front of a sign that is in Taiwanese with the IKEA logo and a map showing Sweden.

Patience – Thank You

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She waited; we waited. The beautiful tiger.We went to Animal Kingdom on Monday. It was wall to wall people. No doubt the park was at capacity. As usual, though, there are times when you can find a peaceful place away from the herd. Whilst the crowds pressed against the window, she kept her distance. She waited, and they lost patience and left.

Sandy and I quietly moved to the window and waited. There she was, looking at us from over the hill. Satisfied that she could patrol in peace, she moved into our viewing area. Satisfied that waiting was going to pay off, we remained quiet and still.

For several minutes she patrolled her territory near the window. More people came, and she quietly sauntered back over the hill. We knew she was there, but our private audience was over.

There are times I get hopelessly frustrated when I cannot get to something or see over obstacles or people. If I’m patient and work around the situation, often good things will happen. We all have limitations, some more obvious than others, but if we are patient and believe we can accomplish much.

Thank you for stopping by. I appreciate each of you. And thank you for your patience as I went too long without writing. I had an unwelcome guest sharing my body in the form of MS fatigue. I’m hoping it left and went back to wherever it came from in the first place.

Top photo shows a hill with a wooded area opening onto a clearing. The tiger is looking over the hill directly at us. The next two photos show the tiger pacing back and forth in front of us.

Top ten things not to say to a wheelchair user – ever. And then some tips.

After I commented on my friend’s blog in regard to vision, she suggested I apply the topic to wheelchair users. I’ve had a lot of things said or done to me because of my ever-present wheelchair, and some of them should never be said. Maybe you are curious, so here are the top ten things never to say to a person who uses a wheelchair.

#10 Don’t talk to me standing up if you can sit down unless you are trying to intimidate me. It won’t work, but it will make me angry. Sure, if you are serving in a restaurant where the patron would normally be seated, that’s different.

#9 “Do you have a license for that thing?” Enough with the comments about a driver’s license or about speeding.  We have all heard it many times. Maybe even already today. Instead say what you would say to a person who is walking by, “Have a nice afternoon.”

#8 “You drive!?!” Yes, I drive, quite well in fact. For the most part it’s no one’s business if I drive, and most people assume I do. If, for example, your new neighbor is a wheelie you might inquire about driving, asking if he/she will explain or show you how they drive. Most of us love to demonstrate.

#7 “Can you walk?” Unless you are the TSA or the gate agent in an airport, it’s none of your business if I can walk. If I could walk I would. Granted there are some wheelies who can walk short distances. But whose business is it anyway?

#6 “My grandmother had one of those.” Oh, did she? Do I look as old as your grandmother? The implication is that I’m old and feeble like your grandmother. For the record, before writing this I did a seated aerobics session.

#5 “What’s wrong with you?” Oh, most of us do hate that one. Quite frankly, nothing. There is a reason we use a wheelchair, but that reason is often in the distant past. It might take only seconds to damage the spinal cord, and then it’s over. After the initial damage, nothing is wrong. I have a family and a good quality of life. I just do it sitting down. When you think about it, that’s not so different.

#4 “How long have you been in a wheelchair?” Let’s see, I’d say about 30 minutes. Did you mean, ” How long have you been a wheelchair user?” I might tell you and I might not, depending on the circumstances. Are we becoming friends? Then it’s a natural question. Otherwise, if it isn’t intruding, perhaps, “You seem experienced.”

#3 “Here, I’ll help.” Most times I don’t need or want help. I function fairly well. I am grateful when someone asks, “Do you need assistance with that?” “Would you like me to help you?” So many times well meaning souls intervene and create a bigger problem. Politeness and courtesy are excellent guides.

#2 “I’ll push you.” NO. Please don’t do this. If I’m struggling up a hill, having someone ask might be nice, but then I can show them how do do it safely. I have to share this with you. When I was a newbie I was in the restroom on a college campus in Richmond, IN. I had conducted that for which I’d come and was washing my hands. A man emerged, said “Here, this will help,” as he grabbed the handles of my chair, picked the back up, and spun me around before departing as quickly as he’d emerged. I was now stuck and had to go back where I’d been, take the wheels off, and put things back the way they needed to be. From my next chair to this day, they have all have had handles that stay down and can be pushed up if needed.

#1 Here we go with the most insensitive and degrading words in the life of a wheelchair user. “Bound” and “confined.” Just writing those words raises my blood pressure. “After his accident he is confined to a wheelchair.” Why am I confined to a wheelchair? Did I make my lovely wife mad, and she is making me sit in the corner? Convicts are confined in prison. My wheelchair is my liberator. It is how I move, how I cook dinner, how I travel. Then there is the word bound. “He is wheelchair bound.” What? How? With duct tape? With rope? Butcher’s twine? Maybe a garden hose? It is the wrong word and has a demeaning connotation. Instead please use phrases like “uses a wheelchair” or “is a wheelchair user.”

img_2896So here I am in the park. (Balancing my trunk with my elbow on the picnic table and my hand on the seat.) Not bound, not confined, not even in my wheelchair. It’s a miracle! Actually it is. My custom fit, titanium wheelchair is a miracle of progress, a prosthetic body that serves me well.

Tips: I’ve been ripping up well intentioned people to make a point and maybe let off a bit of steam. Let’s focus on the positive and how we can work this together.

Thus far we’ve put responsibility on you, not me. I have responsibility, as well. Let’s talk about the responsibility the wheelchair user has, and it is significant. People do not know what to expect. Perhaps they have overestimated someone’s ability and been embarrassed. First, we need to direct our own show. We need to push ourselves, if we can, into the restaurant and up to the greeter. When asked how many, proclaim the number with a smile and with confidence. People who use wheelchairs have differing abilities. Show yours off in a positive light. Then there is posture. No one looks good with bad posture. Do your best. The same goes for clothing and hair. A clean, stylish appearance says more than anything. There are any number of websites and blogs that show how women and men can look nice on wheels. And please don’t take yourself too seriously. In a restaurant a young couple very kindly moved their chairs and their baby’s high chair, so my chair would fit through. I thanked them profusely and said, “I’m pretty wide.”

Thank you so much for stopping by. I have a good life with a loving, supportive family. Wheelchair users have some frustrating limitations but make the most of what we can do. Please comment or ask questions. Again, thanks.

Picture shows George sitting at a picnic table in the park. His body is turned sideways with feet on the ground. Elbow is resting on the table, and opposite hand is on the bench for balance. Posture is good. His wheelchair is not in view.