Tag: wheelchair

When kids ask questions about my disability

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Kids can ask embarrassing questions. Having muscular dystrophy you start to get the questions about the same time you start to walk funny. I find it happens most often in the grocery store when the kids are strapped in cart with nothing better to do than look, point, and say, “Mommy, why does he get to use that car to go around the store?!?”

Naturally the mom is usually really embarrassed but personally I take no offense when a kid asks a question about something that is new or different to them. It’s natural. They don’t know the answer. Often the parents don’t even know the answers. It’s uncharted territory.

I am never offended, put off, or angry when a kid (or even an adult) asks me questions about my disability or muscular dystrophy. If you do get offended, get over it. You’re going to have to deal with it for a long time so you might as well educate people instead of make it seem like everyone with a disability has a chip on their shoulder.

Whenever a kid asks me a question about my disability, I take it to be a teachable moment for both the kids and the parents and it’s very easy to do and here’s how.

1. Smile.
This is so important because it puts everyone at ease and shows immediately that you are not offended by the question.

2. Put your answer in terms the kid will understand.
I usually just say, “Well my legs don’t work the right way so I have to use these wheels to get around instead of walking.”  Most of the time I don’t even get a follow-up question but sometimes you get a really inquisitive kid who just wants to know everything. Fortunately the parent usually tells the kid they have to go and the conversation ends there.

3. If the parent apologizes tell them it’s not a big deal.
This is the teachable moment for the parent. I think curiosity in kids is a great way for them to keep learning. I’d hate for the interaction to be an opportunity for the parent to inadvertently teach the kid it’s not okay to ask questions, when it is.

After a while of dealing with the questions you eventually get your stock answers. There are times when someone will ask something I’ve never been asked before but those times are much more rare now. So have fun answering the questions now that you now how!

When should I give up on walking?

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Walking is an advantage as a human because the world is set up for walkers. I walked until just past 30, when I decided that using a wheelchair would benefit me much more than what was left of my walking ability would give me. This is the quandary: At what point is it better to use a wheelchair than it is to keep walking?

I see people struggle to keep walking or set their hopes on walking again some time in the future. I must say that unless it’s a full-blown normal type of walking that includes being able to walk quickly, go up stairs, and not fall down often then I don’t really want to walk. When it was difficult, walking was a huge negative in my life.

First, doing anything involving walking became stressful. I didn’t want to get run into by a frenzied kid. I didn’t want to trip and fall in the middle of a parking lot. I didn’t want to have to explain to people that I wasn’t drunk when I got into my car to drive home.

Second, my walking was slow. I get extremely impatient when things are slow — slow walkers, slow drivers, slow lines. I was tired of taking an hour to go through a grocery store when it should have taken 20 minutes at most.

Third, walking limited what I could do by myself. I couldn’t really travel when my walking was bad. Getting around in a new city, much less in an airport was extremely difficult once walking became a challenge. Running errands, particularly to unfamiliar places where parking might have been limited became frustrating and inconvenient.

Most importantly, perhaps, walking became unsafe. Falls became more frequent and although I was never seriously injured I started to feel it was only a matter of time before something bad would happen.

Walking does have its advantages. If you can stand and walk, you can reach things that are higher up. You can maneuver up and down stairs. You can get into bathrooms with narrow doors. I am actually struggling to come up with any more examples, which is exactly my point about this article — our society is designed for walkers but I’m not convinced the advantages of walking are worth crying over once you’ve lost it.

There was a stretch of about five years when I could have benefitted from having a power wheelchair at my disposal but the thought never crossed my mind. Instead I let my limited walking ability keep me at home — rarely going outside or doing anything interesting. Going grocery shopping was the most exciting thing I could do at a moment’s notice because I could latch onto a shopping cart for balance. Aside from that, unless friends were going along or planning something, I usually stayed home.

All this time, I could still walk! A lot of good walking did me. It turned me into a hermit!

So that’s why when I see those news stories and Youtube videos about paralyzed people “walking” again with the help of an exoskeleton, I think to myself, “Meh…I’d rather have my wheelchair.” Not only to they have to strap the big honking thing on their legs, they only walk inches at a time and still have to use crutches to balance! What good is this if you can’t even carry something while you’re walking?

I do understand that these rudimentary “walking” devices are a step towards something better, but until then I’m fine using my wheelchair. These days I get in/out of the grocery store in ten minutes or less — faster than most people. And unlike most people, I can even sit while I am waiting in line.

I don’t regret starting to use a wheelchair full time even though I could probably have kept up some sort of walking for a time. Once I weighed the advantages over the disadvantages, it became an incredibly easy decision to give up on walking. And this is what I recommend: If using a wheelchair will make your life better overall, then use it.

Once you get used to it, you’ll discover that despite it’s drawbacks, using a wheelchair can have its advantages. I’ll write more about that in another post.

How to find a cheap wheelchair

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I have yet to get a wheelchair through insurance. First of all, my insurance wouldn’t approve the chair I wanted with the features I needed. Second, the deductible on my insurance is actually more than I’ve seen some used wheelchairs for and more than what I paid for my current wheelchair. So far I actually have been lucky enough to find cheap wheelchairs a couple times in a couple different places.

If you know exactly what wheelchair you want — make, model, features — then it can be easier to search for the type of wheelchair you want and get a used one for much much cheaper than new. In my experience the used wheelchair market is about 10-20% or less of new cost for a wheelchair that is slightly used. Also many people usually give you the chargers and any other equipment that might have gone with it because they have no idea what these things cost.

The first wheelchair I got was actually a demo model that the vendor was trying to get rid of for cheap. Just like a vehicle that has been around the block a few times, demo wheelchairs can be sold for much less than the original selling price. The advantage to getting a demo wheelchair is that it is cheaper than new and has likely been taken care of by the vendor. However it can still be a pricey way to get a wheelchair.

My first recommendation is to look on Craigslist.org in your area. Do a quick search for “wheelchair” in your area under the entire “For sale” category and see what comes up. I tend to monitor my area for the type of chair I am currently using so that if I find one come up for cheap I can snag it and use it as a backup, keep it for parts, or use it if my current chair ever fails completely.  I bought my current chair from someone advertising on Craigslist an hour away. New, my chair would cost $7500. I got this one for $300 and he threw in a manual chair for free.

Second, check out eBay. You can set up a regular search and check to see if your wheelchair comes up in auction or Buy It Now. Usually the chair is not in your area and it seems as though most people are reluctant to ship wheelchairs across the country because it can be cost prohibitive or a hassle. I actually do not recommend buying a wheelchair off eBay unless you are able to check it out in person and make sure it works. I have had luck with buying wheelchair parts unseen on eBay but would probably not buy a wheelchair unless I saw it first.

Lastly, check rummage sale listings and auctions in your area. I have seen wheelchairs come up at estate auctions quite often. One time a nice Quantum chair went for around $200. Usually at these things people have no interest in buying wheelchairs so you can find a cheap wheelchair if you keep your eyes out.

Overall I think patience is the top thing to keep when looking for a cheap wheelchair. But you never know when the one you want might come up, so you can’t give up. I usually like to check both Craigslist and eBay whenever I am on a road trip to see if there are any cheap wheelchairs in the area I am driving through.

One caveat to keep in mind. If you have particular mobility needs or positioning requirements, make absolutely sure you get your new (used) wheelchair checked out and tuned up by a professional. You do not want to sacrifice your health simply to save money on a cheap wheelchair.

Good luck on your search for a cheap wheelchair! I know you’ll find one eventually if you keep your eyes open.

My first day using a power wheelchair

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I didn’t start using a wheelchair until I was about 30. A the time I was still walking and the chair I was getting had a vertical seat lift that could lift me up so I could stand up more easily and still walk at home. Around the house I was walking fine. It was a comfortable environment. But when I was outside my house it was very difficult to get around with things like uneven terrain and steps. I had a manual chair that I would take with me outside the house but I always needed someone to help me and push me because if there was any sort of incline, I couldn’t push myself in the manual chair.

So I arranged to buy a demo power wheelchair at a discount with the help of vocational rehab and MDA and it was delivered to my house. Inside the house it was great — easy to move around and fun, like a video game. But I was scared to go outside. There was traffic and other people and dogs and dog poop. It seemed scary.

To get over this, I called one of my friends on the phone and I said, “Please ride along with me!” and I went outside my door. I rolled down the sidewalk to the street corner where the stop light was. My friend kept telling me there was nothing to worry about, and that helped. Finally I said goodbye to my friend and crossed the street.

Then I crossed the next street and the next and the next. Pretty soon I was at the grocery store and doing shopping. I was in and out in 15 minutes. I rolled back with 2 bags of groceries. I was there and back within an hour. I didn’t need anybody’s help and I didn’t worry once about falling or getting tired. It was great.

I can’t believe I was ever scared.

Flying to Italy in my wheelchair

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Tuscany from the Shuttle

One summer I was traveling to Italy by myself to play in a tennis tournament and didn’t know a word of Italian. But I figured as long as I knew how to say “Hello,” “Thank you,” and “Do you speak English?” I’d be okay.

My plan was to fly from Chicago to Rome and transfer to Florence. Since I was unsure about traveling in a non-English speaking country for the first time I made sure my layover was at least three hours. In hindsight, this was the best planning I made on that trip.

You see, when I arrived in Rome, I was taken off the plane and brought to my electric wheelchair in the International terminal. The two Italians spoke English, and said they were taking me to the new assistance area for people who needed special help. As they said this, I remembered reading something online about a new service at the Italian airports to provide assistance to disabled passengers. So I thought I would be fine.

When I arrived at the assistance lounge, I am pretty sure the first words out of the director’s mouth were the Italian equivalent of “Mamma Mia!” which in hindsight would have been “Mamma Mia” so it was probably something even better. They all took one look at me and my chair and were wondering out loud something in Italian. The looks on their faces said that they probably had never helped anyone in an electric chair before.

“How much it weigh?” asked the man behind the desk.

I immediately had to convert pounds to kilograms in my head and said, “Ninety kilograms.”

“Ninety? No, no, no, really?”

“Yes” I said as he began inspecting the chair.

Now imagine the discussion that proceeded. I saw lots of pointing to the chair and arms acting out a lifting motion. One person jumped on the phone, another ran out with a handheld radio looking for someone named Francisco or Antonio or something ending in a vowel.

One nice younger girl tried to tell me in English that it was going to be okay and just wait. I don’t know if that did the trick, but for whatever reason, I was not stressed at all about making my connection. At this point I had two-and-a-half hours, and the staff seemed to know what they needed to do.

An hour passed, but they definitely hadn’t forgotten about me. Every now and then someone would come in and inspect my chair and try to push it even though it was locked in place because I had it turned off. One tried to lift it a little, but let out a loud grunt and sigh as he walked away without being able to make it budge. I just chuckled.

Finally someone came and said, “Come on, we go to the gate” and I followed him through security and downstairs where they queue people to take buses out to the plane. Within a few minutes, a special van was backed-up next to the curb and a ramp as lowered. I got on the van and they took me out to another truck. I got in the back of this truck, which was more like a delivery truck and they drove me out to the plane. Once at the plane, 2 guys got in the back of the truck with me and suddenly we were being lifted up to the plane door. At the door, they deployed this tiny ramp and picked me up off my chair, put me in a narrow wheelchair. The tiny chair rolled over the ramp and the guys put me in my seat.

I heard the truck lower and leave, and from me seat saw it coming around the other side of the plane where they raised it up again and I assume put my chair into the cargo hold.

Transfer complete. And I didn’t have to tell them anything. After all, it’s not rocket science – person and wheelchair both need to get on the plane. Figure out the rest later.