Tuesday, April 18, 2017

The Art of Peeing in Bed (on Purpose)

As significantly disabled people go, I am the exception. My bladder still works. To take advantage of that, however, requires ingenuity.

During the day, I pee into little containers and empty them into the nearest toilet. Straightforward stuff. But liquids have this unfortunate tendency to flow downhill, and that presents a challenge when I’m lying down in bed.

When it became too difficult for me to sit up in bed and use a container, much like I do in my wheelchair, the difficulties began. For a few years, I had the strength and dexterity to roll over on my side. Once I’m on my side, there’s room for the container, and everything flows downhill. Piece of cake.

As my disease progressed, it became too difficult for me to roll myself over, so I had to wake Kim to assist me. Not straightforward. Not a piece of cake. This interrupted Kim’s sleep, one or two times per night, and it was an imperfect process. She had to roll me over and stick a pillow behind me before I rolled back. Our success rate was less than 100%.

This is where ingenuity came into play. As I searched the internet for a better device for Kim to stick behind me after rolling me over, I happened upon this inflatable pillow:

This product is typically placed between the mattress and box spring, and is used to elevate the head of someone's bed. Here is the description:
The Contour Products Mattress Genie Bed Wedge is an adjustable alternative to foam bed wedges, and an affordable alternative to hospital beds. With just the touch of a button on the hand held remote control, you can raise the head of your bed up to 26" high. When not in use, simply press "flat" and the air bladder will disappear from view, eliminating the issue of storage for a bulky foam bed wedge. 
I began to wonder. What if I turned this pillow lengthwise and laid it underneath one side of my fitted sheet? Because it inflates and deflates rapidly, could it serve the function of rolling me over in bed so I could pee in the middle of the night without Kim’s assistance?

I ordered the device, and we tried it out. It worked—spectacularly. Kim and I both sleep better. I no longer need to dehydrate myself in the evening. I had begun to fear that, although my bladder function is near-normal, I would have to resort to intrusive devices simply because liquids like to flow downhill. Now, I’ve put that thought off for a while longer.

Yes, I realize this example is more evidence of how much simpler men’s lives are than women’s, even in the disabled community.

Although I couldn’t avoid the words pee, bladder, and toilet in this blog post, I didn’t use any unpleasant words like penis, urine, urinal, catheter, or New York  Yankees. You’re welcome.

Tuesday, April 11, 2017

Disabled Cruising 2017 Part 5: All Good Things…


The last time we flew home from the Caribbean, the airline lost both of my power wheelchairs. That memory, and the knowledge that we had eight wheelchair transfers ahead of us, might have induced a certain dread for the trip home, but it didn’t. We had something working in our favor—first class seats on both flights. Did we spent more of Kim’s eBay earnings on such an indulgence? No. We had paid for coach, but for no apparent reason, they assigned us to first class.

When we have short layovers, like we did on this trip home, we always specify that both wheelchairs be checked through to our destination. But when we arrived in Philadelphia, they brought my Permobil wheelchair up to the mouth of the plane, despite my instructions to the contrary. Kim, Andy, Karen, and I explained that we didn’t have time to reassemble the Permobil, transfer me to it, disassemble it, and get it on the next plane. Per the tags on the wheelchair, it was supposed to be checked straight through to Boston.

“No problem. We’ll get your wheelchair to your next flight.”

I was satisfied. Kim was skeptical.

The airport wheelchair they brought me was rather ancient, but I knew I’d only be in it for a short time.

“Let’s remove the armrest,” I said, “so I can slide from this aisle chair into the airport wheelchair.”

Six people tried to get the armrest off, then one of the airport employees stated the obvious. “The armrests on this wheelchair are not removable.”

“Then let’s remove the leg rests,” I said, “and I’ll slide in the chair from the front.”

Six people tried to get the leg rests off, then one of the airport employees stated the obvious. “The leg rests on this wheelchair are not removable.”

Apparently, I was the first wheelchair user this airport had ever encountered. The only option became lifting me up and into the wheelchair, instead of sliding. Six people each grabbed a piece of me and made it happen. I survived.

When we reached the gate for my Boston flight, they had already begun boarding the plane. In most cases, this would have caused me some consternation, because passengers already seated in the plane would have been able to gawk at me as I boarded. They would see how the sausage is made. But I didn’t mind in this instance because I was in seat 1A. Surrounded by my team of lifters, pullers, and tuggers, nobody would get a good look at the sausage-making other than the guy in 1C.

Soon after we boarded our final leg of the trip, the flight attendants closed the door, and we were ready to go. But we didn’t go. Kim’s instincts had been right. The pilot came on the speaker system and said, “We are all ready to go but are waiting for an electric wheelchair to be loaded into the luggage compartment. Once that is done, we’ll be underway.”

At least 100 people, the front half of the plane who could see me when I boarded, knew damn well whose wheelchair was holding things up.

I expect their reactions broke down this way:

50 of those 100 passengers thought, “How awesome that somebody so disabled is still able to travel. I guess I can wait a few minutes.”

12 passengers thought, “His poor wife…”

10 thought, “Look at his wife, that lucky bastard.”

7 thought, “I can’t believe the pilot just singled him out that way. Very inconsiderate.”

Sadly, 6 passengers thought, “People like him shouldn’t be allowed to fly. He holds up everybody.”

5 thought, “I wonder why he can’t walk.”

4 thought, “How can he afford to be in first class? Must’ve got a big settlement.”

3 thought, “What if he has to pee on the flight? Or worse?”

2 passengers thought, “I wish I was paralyzed so I could quit this damn job.”

And 1 passenger probably thought to herself, “I don’t know if he has MS or something else, but I sure hope my MS never gets that bad.”

When we arrived in Boston, Andy went to get the van and Karen, Kim, and I headed to baggage claim. Everything was accounted for except the iBot. I went to the baggage office to inquire. The gentleman in front of me was ripping the person behind the desk a new one.

He said, “I am appalled that you would treat a first-class passenger this way.”

You poor baby. You poor fucking baby.

The other attendant quickly found my iBot, and we were on our way.

So ended another wonderful vacation. I’m grateful that I have the resources to travel this way. And I’m thankful for the help of my brothers, my sisters-in-law, and most of all, my amazing wife. We had so much fun that we’re going on another cruise this summer.

Maybe I’ll blog about it.

For part 4, click here.

Tuesday, April 4, 2017

Disabled Cruising 2017 Part 4: On the Ship

For this vacation, we decided to use Kim's eBay earnings to see how the other side lives. We booked a wheelchair accessible suite, which is of course larger than a normal suite, which is larger than a normal cabin.  Certain perks came with the suite package too, such as a butler (who we shared with ten other suites), unlimited internet, premium drink package, private cocktail bar and dining room, champagne upon arrival, preferred seating at the theater, and a bunch of other, mostly minor, stuff.

I’m reminded of the movie Titanic, where the first class and steerage passengers were kept separated. Like Rose’s fiancé in the movie, I knew I would have to remain diligent to keep Kim from sneaking out of our cabin to go below decks and party with the real people. I think I succeeded, but there was that one night when I didn’t hear any snoring from the other side of the bed…

The Ship 


I find large, modern cruise ships to be more accessible than even the nicest hotels. This ship, Celebrity’s Silhouette, did not disappoint. The cabin was spacious and wheelchair friendly, especially the bathroom. When I pushed my key card into the slot, the door to our cabin not only unlocked, but it opened for me. And the public spaces shined. Almost every door I encountered opened and closed for me automatically. The entrance to every public bathroom was equipped with a pushbutton, as was the entrance to the accessible stall within. Few ramps were required because few elevation changes existed. And elevators? There were banks and banks of them.

Outstanding food options are included in every cruise package, but they try to get you with high-end restaurants that require you to pay a premium. With our suite package, we had access to a couple of these without an extra fee. I remember on our first cruise seven years ago, we ate in the main dining room every night, and we considered the quality of the food and the service to be five-star. By dining at the same table every night, we were waited on by the same service folks and sat with the same dining companions. We learned a little bit about the staff and our companions, and they learned a little about us. By day two, our favorite drinks were awaiting us when we arrived. On this cruise, however, we ate at a different restaurant almost every night. Again, the food and service were outstanding, but we did miss out on that classic cruise experience of the main dining room.

Kim and I like to gamble. I play the blackjack tables, and she plays video poker. We frequented the ship’s casino, as did my brother Andy. I came in second place in the blackjack tournament, but that pot wasn’t enough to offset my losses for the week. Kim didn’t make out so well either, but we met a lot of people and had fun.

Each evening we rendezvoused with the rest of our gang on the appropriate deck to have a drink and watch the sunset. Here are a few photos.






The iBot


Although almost nine years old now, the iBot still impresses. My other chair, a Permobil, does more tricks than the iBot, and it is better suited for everyday use, but nothing turns heads like the iBot’s balance mode or stairclimbing mode. In my Permobil wheelchair, people treating me politely if they noticed me in all. In my iBot, I was a rock star. I encountered a problem, however, which was a first for me with the iBot. In balance mode, the chair is quite good about adjusting to various inclines, but it has no ability to adjust for elevation differences in the opposite axis, sidehill situations. Here’s what I mean.

One day Andy rented a cabana on the top deck of the cruise ship. One of the unique features of the ship, or this class of ship within Celebrity, is the real grass lawn areas on the top deck. The first time I approached our cabana, I didn’t realize that a curb crept up on the sidewalk. When I hit the angled curb in balance mode with just one of my tires, see picture below, I thought I was screwed. But the iBot quickly diagnosed the fact that I was about to tip over, and it dropped me from balance mode into four-wheel-drive mode so quickly that I didn't tip over at all. As everyone does when they stumble, the first thing I did was look around to see if anyone had seen me, and they hadn’t. Still, I confessed my story as we sat in the cabana and sipped on tropical drinks.

One evening, as we were hanging out at a nightclub, a gentleman approached me when I was in balance mode.

“How long have you been in your iBOT?”

“Almost nine years. I got one of the last ones made.”

“We’re making an iBOT 2.0, you know.”

“You work for DEKA?”

“Yes I do.”

“Hey, I’m the guy on the landing page of your website…”

We had a nice conversation on all things iBot, and he is excited about the next generation product, although he couldn’t provide me with many details.

I’m going to miss my iBot when it finally reaches the end of its life.

One more post about the cruise!

For part three, click here.
For part five, click here.

Tuesday, March 21, 2017

Disabled Cruising 2017 Part 3: Cozumel and Jamaica

Why do Kim and I go on elaborate, expensive vacations? Why does anyone? It can’t be that these weeklong excursions make us happy only during the time we spend away, 2% of our year. It must be that they have a lasting effect, or at least we believe them to (is there a difference?). Midway through this cruise vacation, I lamented how this is only fleeting. I can’t make it stick. I can’t make it last. In just a few short days, it will be gone, and will it have been worth it? Then I ordered another margarita, watched the sun melt into the ocean, and went back to living in the moment.

I can’t explain or justify why, in recent years, we’ve been traipsing all over the Caribbean. I’m sure it has something to do with stress reduction, mental health, living life to the fullest, etc. But for Kim and me, there may be another reason. We go on vacation because we still can, and we want to show the world that we still can, and we want to show one another that we still can. But most importantly, I think, we do it because we still enjoy it. We do it to feel alive.

I am still alive.

Cozumel, Mexico


Kim and I had been to this tourist mecca before, on our first cruise seven years earlier. We had a blast that day, but we weren’t sure that the experience would be repeatable. Back then, it was spur-of-the-moment kind of fun. So we didn’t recommend that in 2017 the six of us walk into town and randomly bounce around bars until we got drunk. Instead, we asked the concierge on the cruise for ideas. She suggested a hotel within walking distance of the pier, which might be a fun place to hang out for the day.

This time, Tom and Andy volunteered to be the advance team. They found the hotel, confirmed it was wheelchair accessible, and learned it would cost us the enormous sum of $20 per person to hang out by their pool and on their Caribbean beach for the day. Oh, did I mention that included a $12 credit toward lunch? Cozumel is so affordable and so fun.

On the walk from our ship to the hotel, we encountered various vendors. One of them kept repeating the same request to us and our fellow cruisers: “Don’t build that wall.” This is a serious issue to many people on both sides of the border, but we couldn’t help laughing about it several times during the day.

Jamaica


This was our third trip to the enchanted island of Jamaica. Our ship docked at the relatively obscure port of Falmouth. This time, Tom and Diane were the advance team. Kim had identified a highly-rated restaurant on Trip Advisor where we could get authentic Jamaican jerk chicken. Tom texted us around 8 o’clock to say that he had found the restaurant and it was wheelchair accessible.

The city of Falmouth has invested in upgrades to the cruise ship terminal. When we stepped off the ship, we were greeted by an almost Disney-like caricature of Jamaica. Modern shops, clean streets, friendly proprietors, curb cuts, accessible public bathrooms, no scary people, no police. We spent an hour or so walking around that area, then it was lunchtime.

When we left the “Green Zone” we encountered the real Jamaica. In their scouting run earlier in the day, Tom and Diane had enlisted the services of a local to guide them through the craziness to the restaurant. The same local approached the six of us as we emerged. For a handful of greenbacks, he led us through the gauntlet of vendors — clothing, memorabilia, drugs — toward the restaurant. I noticed that the seas parted ahead of him. He was a man not to be messed with, and I wondered what he must have done to earn that reputation.

Of course, I was in balance mode in my iBOT, and the natives expressed their amazement. For the first couple of blocks of our walk, there were police officers everywhere. I couldn’t decide if that was more comforting or concerning. When we got further from the port, and the police presence dwindled, I didn’t feel unsafe. The scene can be intimidating in Jamaica, but we were very much their guests, their guests with money to spend.

The restaurant was a hole in the wall. Well, actually, there was no wall. A collection of run down tables and chairs surrounded what looked like an outdoor bar. We sidled up to one table and placed six orders for Jamaican jerk chicken, and a round of RedStripe beer. The chicken was accompanied by local side dishes — rice and vegetables — with optional hot sauce. It tasted amazing.

After devouring the chicken, our guide led us back to Disney-Jamaica. We hung out at Margaritaville another hour, boarded the ship, and set sail for home.

To be continued…

For part 2, click here.


For part 4, click here.







Wednesday, March 15, 2017

Short Video about My Physical Therapy Experience

If you are receiving this through email, click here to watch the video.

Monday, March 13, 2017

Disabled Cruising 2017 Part 2: CocoCay

In the weeks and months leading up to an elaborate vacation, I build visual models in my mind. Before this cruise, I imagined a virtual state room, various parts of the ship, the ports of call, and more. Some of this modeling was based on research and previous experience. The rest, I probably acquired from the same image store I shop at for my nocturnal dreams:
What can I get for you today, Mr. Sturgeon?
For my upcoming cruise, I need visions of typical Jamaican city streets, and don't skimp on the olfactory sensations—need to keep it real, mon. I also need a cruise ship swimming pool, and a few hundred extras, preferably good-looking ones, but I'll take whatever you have in inventory.
And for tonight’s dreams, I need images of my father morphing into a grizzly bear and chasing me through the woods. Oh, and you might as well give me a replica of my 8th grade classroom so I can realize in the middle of my math exam that I am not wearing pants. 
That’s all?
Oh, don’t worry. I’ll be back for more.
Inevitably, when these vacations begin, my newly formed memories overwrite the models I constructed in my mind. The visions I spent so much time cultivating always disappear, except that one time I made a conscious effort to remember them, just as an experiment. The actual overwhelms the anticipated, forever erasing these abstractions from the hard drive of my mind.

I’m certain that my brain isn’t the only one that works this way. Right?

Please tell me I’m right.

First stop – CocoCay, Bahamas

At some ports of call, the cruise ship ties up to a dock, and passengers walk onto shore. This was not the case at CocoCay. Everyone going ashore had to board a tender boat, which shuttled passengers from the cruise ship to the island. I decided to use my iBot wheelchair on CocoCay, because I knew there would be a lot of sand to navigate, and the iBot is the only wheelchair I have which can operate on sand.

We had reserved a cabana on CocoCay. This would give the six of us a private spot with some shade for the day. Tom and Diane, early risers that they are, took the first tender to shore and claimed our cabana. Somehow Andy and I became separated from Kim and Karen, and we each took separate tenders. Ship personnel arranged it so that I got on the tender last and got off it first, which suited me fine. Below is a photo Tom took as my tender approached, and a zoom of the same photo. Note that Andy and I are on the open deck, and all the other passengers are stuffed into a lower or upper compartment. I liked my spot.



As soon as I disembarked from the tender and headed for the cabana, an employee intervened to inform me that power wheelchairs can’t operate on sand. I politely told him to stand aside and watch. I left my signature all over the island.


We had a wonderful day on CocoCay, and on our voyage back to the ship Andy went out of his way to again stand with me on the deck of the tender. I suggested that his gesture was 20% brotherly love and 80% personal comfort. He didn’t deny it. Traveling with me isn’t all bad.

To be continued…

For part one, click here.

For part three, click here.

More pictures from CocoCay:








Tuesday, March 7, 2017

Disabled Cruising 2017 Part 1: Getting to the Ship

Security

It began at 4:00 am at the TSA checkpoint, Logan Airport, Boston. My brother, Andy, and his wife, Karen, zipped through without a problem. Kim did too. A TSA agent shouted, “MALE ASSIST, MALE ASSIST.” I waited a long while for the male assist.

He noticed I had my backpack hanging off my wheelchair. To remove it, I explained, he would need to take off the headrest. Male assist dude couldn’t figure out how.

“My wife just went through security. Go get her, and she’ll help you.”

After a few minutes, Karen, not Kim, arrived and explained that Kim was in the bathroom. Karen couldn’t figure out how to remove the headrest either.

As I sat there, the current of busy travelers flowed around me like I was a boulder in the middle of a stream. Eventually, I spied Kim. She and Karen changed places. Kim removed the headrest, placed the backpack on the conveyor belt, and reinstalled the headrest.

Onward.

The male assist dude guided me to a spot where he could pat me down and inspect my wheelchair. I soon discovered he was a mere trainee. Two senior personnel directed his every move and criticized his numerous nonconformities. Several times, they made him go back and repeat steps until he got them right. By the end, he was quite flustered, and so was I. When I finally arrived at the gate, it was time for me to board, so my plans for a leisurely breakfast never materialized.

Transfers

Wheelchair people use the word transfer to describe the process where we move from our wheelchair to something else or from something else to our wheelchair or from something else to something else altogether. Transfer is an appropriate word for the controlled manner I move from my wheelchair to my bed at home, for example.

Transfer, however, was not an apt description of how I moved from seat to seat when we flew to Fort Lauderdale last week. Better words would have been: dragged, stuffed, tossed, yanked, ejected, eighty-sixed, or given the ‘ol heave ho, in no particular order.

“Mitch, how many of these transfers does it take to fly from Boston to Fort Lauderdale?” I’m glad you asked. Let’s count…
  1. from my personal wheelchair to the Boston airport’s aisle chair*
  2. from aisle chair to airplane seat
  3. from airplane seat to Dulles’ aisle chair
  4. from Dulles’ aisle chair to Dulles’ wheelchair
  5. from Dulles’ wheelchair to aisle chair for second flight
  6. from aisle chair to airplane seat, second flight
  7. from airplane seat to aisle chair, Fort Lauderdale airport
  8. from aisle chair to my personal wheelchair, Fort Lauderdale airport
That’s right; it took eight transfers using a slide board and brute strength. I had assigned Andy, Karen, and Kim specific duties during these transfers, and they dispatched said duties with aplomb. Airport personnel helped too, but they hadn’t attended my mandatory training sessions (worth 10 Continuing Education Credits) and received my certificate of completion, suitable for framing, as the others had.

Four Hundred and Forty Pounds

Transfers and TSA pat downs weren’t the only problems. While our 737 sat on the tarmac at Logan Airport on Sunday morning, one of the baggage handlers came down the aisle to ask me a question. “How do you either fold down or remove the back of your power wheelchair? It’s too tall to fit in the luggage door.”

I responded, “I don’t think there is a way. You’ll have to lift the chair and turn it sideways, like moving a sofa through an apartment door.”

“How much does that chair weigh?” He asked.

“Four hundred and forty pounds.”

He rolled his eyes and said, “We’ll figure something out.”

Looking out the airplane window, we watched a group of baggage handlers wrestling with the wheelchair, and this made us a little queasy. After a time, the captain announced, “We’re still loading the final pieces of luggage. It shouldn’t be long.” I appreciated how he didn’t point out that I was the one holding up the entire flight.

After a 20-minute delay, we took off. At Dulles Airport, we exited the airplane without incident, zipped down the terminal and were the first to board our connecting flight. Once again, we looked out the window and saw baggage handlers examining my wheelchair, pushing on the seatback, and scratching their heads.

“Wait a minute!” I said to Kim. “If we re-attach the joystick controller we can recline the seatback. That should solve the problem.”

Kim rummaged through her carry-on and found the controller we had removed from the wheelchair, for safekeeping, after I transferred to the aisle chair in Boston. She swam upstream against the passengers still boarding and approached the flight attendants with this simple, elegant solution.

“I’m sorry, but you can’t go down there,” said one attendant.

“But all I need to do is…”

“No. You absolutely cannot do that,” said the other attendant, looking down his nose at Kim as if speaking to a small child who had asked if she might sit on the pilot’s lap and steer the plane.

How foolish of us.

Then we saw the baggage handlers open a toolbox and begin operating on my wheelchair. Although I couldn’t read their lips, I imagined them saying:

Scalpel…

… Scalpel

Clamp…

… Clamp

Suction…

… Suction

I think I’ve got it. There it is, success…

… You are such a brilliant surgeon

And you are such a lovely nurse. Now wait for me in the doctors’ lounge, and I’ll show you some of my other skills. (Perhaps I’ve been watching too many hospital dramas over the years.)

Somehow, these baggage handlers lowered the seatback and got the chair loaded into the airplane.

Champagne

When we arrived in Fort Lauderdale, they brought the wheelchair up to the mouth of the plane, and I transferred to it. Sure, the seatback was too low, but we cared only about getting to the ship. Seating adjustments could wait.

Less than an hour afterward, the four of us joined my brother, Tom, and his wife, Diane, who had wisely flown down a day earlier. We lounged on the deck of our stateroom on the Celebrity Silhouette, relieved that the journey we had worried about for months was behind us. Although we experienced some rough patches on the flights down, we made it in time and intact. And, like a mother who endured unbelievable pain and discomfort throughout childbirth, only to say a year later, “That wasn’t so bad. Let’s have another,” we agreed that the trip from Boston to Fort Lauderdale had gone well. Perhaps the rough edges were smoothed over by the chilled bottle of champagne that greeted us in our cabin.

Things were about to get much better.

For part 2, click here.

*An aisle chair is a narrow wheelchair designed to fit down the aisle of an airplane, depicted in the photo at the top of this post. Also note that I had checked my iBot wheelchair at the ticket counter, all the way through to Fort Lauderdale. I like to travel with two wheelchairs.

Tuesday, February 28, 2017

The 100 Best Disability Blogs

Stairlifts Reviews 100 Best Disability Blogs
When I received an email from a company in the UK called Stairlift Reviews, informing me that I had been named to their list of the top 100 disability blogs, I was skeptical. Either it would prove a hoax, I assumed, or I would be asked to solicit online votes from my readership. Although I know many readers would be happy to click repeatedly on my behalf, I am philosophically opposed to such contests. I always take a pass.

In this case, however, I was pleasantly surprised. There was no requirement for me to solicit votes. Furthermore, I found their list to be chock full of outstanding blogs, which I am proud to be mentioned alongside. To see the complete list, click the 100 Best Disability Blogs.



Note: cruise blog posts next week

Tuesday, February 14, 2017

We’re Going on an Adventure

“We don’t want any adventures here, thank you! You might try over The Hill or across The Water.”

— Bilbo Baggins’ response to Gandalf’s proposed adventure in J.R.R. Tolkien’s THE HOBBIT.

It’s so much easier to stay home, whether home is a hobbit-hole in Middle-earth or a wheelchair-accessible, voice-controlled, single-story house in the city. Nevertheless, Kim and I occasionally feel the urge to venture forth into the disabled-unfriendly world beyond, orcs and goblins be damned.

Kim’s eBay business, her side job, turned a sweet profit in 2016, so we’re going on a cruise. The only other cruise we've been on was 7 years ago (photos below).

The logistics of a vacation like this are daunting. Here are a few issues we’ve had to deal with during the planning stages:
  • Finding a wheelchair accessible cabin on a cruise ship. This is not difficult, but does limit our choices.
  • Figuring out how, in said cabin, I will get from wheelchair to bed and from wheelchair to shower, among other places.
  • Deciding whether to fly to Florida one day before cruise departure or take our chances and fly the morning of. Having an extra day is safer, but requires us to spend another night in a hotel, which is a lot of work for us.
  • Finding airline seats with arms that lift so I can slide into the seat from the aisle.
  • Finding a good cushion for me to sit on during the flight. Because I am unable to adjust my position, long flights can be terribly uncomfortable.
  • Deciding how many and which wheelchairs to bring and which one to transfer from at the mouth of the airplane. How will I accomplish the transfer, how do we pack the wheelchair, and which wheelchair attachments do we bring on the plane?
  • How will I get from the airport to the cruise ship?
  • What if it snows on the East Coast?
  • How many days’ worth of extra medications should I bring, in the unlikely event we have trouble returning home because of airline delays, or worse, because we’re floating around the Gulf of Mexico in a disabled cruise ship where everyone is puking and the toilets are clogged for a week?
  • At each port of call, what are the wheelchair accessible excursions available to me?

What have we not thought of?

What will go wrong? It will be something, and it will probably be something we never anticipated.

Are we crazy for even attempting this?

You can bet that I’ll answer all these questions and more when we get home from our adventure (if we get home).

Note to criminals who can't believe their good fortune in me announcing that my house is available for burglary: my house is not available for burglary. We have house and dog sitters, and you don’t want to mess with my dog, Phoebe. That would be akin to waking a sleeping Dragon.

Trivia question: what was the name of the sleeping Dragon in The Hobbit, and what was the name of the mountain where he slept?

Double bonus trivia question: who were the armies in the battle of 5 armies?

Wednesday, February 1, 2017

What Do You Envision When You Hear the Word “Wheelchair?”

Is it something like this?







Or more like this?








Here’s Why I Ask

Last weekend, my brothers and I and three hot chicks we hang out with decided to go to dinner at a high-end steakhouse downtown. Because I had been there a couple of times previous, I knew the drill. There were steps to the front entrance, so I had to use a side door. That led me to a section of the restaurant with only two tables. The rest of the restaurant was one step up from this section. Someone else in my group had made the reservation, and later confirmed the reservation, both times mentioning that someone in our party of six would be in a wheelchair. Sure, I could have brought my iBot (stairclimbing) wheelchair, but I saw no need to.

Diane and I let ourselves in the side door, while Kim and Tom went to the main entrance. Andy and Karen were already there and sitting at the bar. When I saw that both tables on the lower level were occupied, and nobody looked like they were finishing up their meal, I knew there was a problem.

Wrong Kind of Wheelchair

Kim spoke to the maître d’ to indicate that Sturgeon, party of six, had arrived. The maître d’ led them to a table on the upper level, and Kim asked “How is my husband supposed to get to this table? We told you he was in a wheelchair.”

Here’s the thing. For some unknown reason, whoever made the table assignments that night assumed I was in a manual wheelchair. We know this, because he responded to Kim’s question with, “Oh, we have people to help him up over the step.”

“His chair weighs 450 pounds. I don’t think anybody is helping him up over the step,” she pointed out.

That left only one good option. The maître d’ walked up to the table of six at the bottom level and began speaking to them. I couldn’t hear him, but I know exactly what he was saying. He looked at me. They all looked at me. I smiled, and they began standing up. A team of waitstaff moved their drinks and appetizers to the table on the upper level. Thankfully, they hadn’t been served their entrées yet.

All’s Well That…

Restaurant staff apologized profusely, set the table for us, and everything went well from that point. I certainly hope they did something for the people who were displaced mid-meal. As for us, it was par for the course. If I let things like this bother me, I won’t have much fun when we go out. And we did have fun.

Moral of the story—don't make assumptions about your ability to accommodate a disabled person. If you're unsure, ask questions.



Tuesday, January 24, 2017

A Great Time to Be Disabled?

I don’t know if there’s ever a great time to be disabled, but there has never been a better time than now. Here are a few reasons:

Home Automation

Lights, door locks, window shades, entertainment systems, security systems, heating and air conditioning—all these items and more can now be automated in your home. Just a few years ago, this was the stuff of science fiction or could only be found in homes of the super-rich. Today, it’s within reach of most folks, at least in small doses. I wrote about my home automation experiences here.

The Big Four: Microsoft, Apple, Google, Amazon

Microsoft Windows is the platform I spend the majority of my time on. Windows has some accessibility features, but it’s mostly third-party programs, like Dragon NaturallySpeaking, that make my computer friendlier for me. Still, Microsoft gets credit for building the platform.

The Apple iPhones and iPads have decent adaptive features. Siri is helpful for a variety of tasks, but falls short of total voice control. Apple is also making a foray into the home automation business.

Amazon makes this list for two reasons. First, they sell so much disability-related equipment on their site at relatively low costs. Whenever I learn that I can benefit from a new gizmo, I start at Amazon.com. Second, the Amazon Echo is an outstanding product, not only for its portal to home automation, but for the many other features it brings to the table.

Google Home is the me-too version of Amazon Echo. Long-term, I expect great things from Google Home, but Echo has a huge head start. Google and Siri are currently fighting it out for best natural language platform. But where Google really shines for disabled people is with their Voice Access app. I have that app on my Pixel phone, and it allows me to control every aspect of the phone with my voice.

Power Wheelchairs

Rule of thumb is that every five years you get a new power wheelchair. A lot happens in the world of power wheelchairs in that period of time. When I looked at the latest chairs last fall, I was blown away. I’m now in possession of a new Permobil F5 VS, which I’ll be writing about more here very soon. DEKA is partnering with Toyota to produce the next generation of iBot, too.

My mother passed away in 2008, and her power chair was an antique compared to my new one.

Mind Control

There's a clinical trial underway by a company called BrainGate. They are developing a neural interface so that patients can control the cursor on a computer monitor or control other assistive devices with their minds.

You can implant electrodes in my brain and have wires coming out of my skull? Sign me up. (I tried to enroll in the study but they're not accepting people with MS.)

In some number of years—I don’t know if it will be two or twenty-five years—I expect that this sort of technology will become available to most paralyzed individuals.

Exoskeletons

Power wheelchairs are nice, but I would prefer to walk. Several organizations are developing motorized exoskeletons that could make this dream possible. I saw a presentation of one of these devices in Boston last year. It seems that it’s easier to develop an exoskeleton if the user can assist with some upper body function. That isn’t stopping a few researchers from trying to develop exoskeletons for quadriplegics too. In fact, one manufacturer is trying to integrate the type of mind control I mentioned above.

Public Access

As the Americans with Disabilities Act matures, more and more public spaces are becoming accessible to people with disabilities. There’s still a lot of work to do, but progress is steady.

Challenges 
  •  Funding – all these items cost money, and those of us with some financial resources will fare better than those without. Home automation costs money. A 20% deductible on a $56,000 wheelchair is expensive. I could go on. My point is that we need more public assistance or more insurance company participation for devices that enhance the lives of disabled people. 
  • The Downside of Regulation – because the free market can’t provide disabled people with what they need, government must intervene in two ways: funding, as I mentioned in the previous item, and regulation, such as with the ADA. Whenever regulation is introduced, however, clever but unscrupulous people take advantage. For example, in this 60 Minutes story, lawyers are suing small businesses for noncompliance, and pocketing the lawsuit money with no regard to improving accessibility, or even providing their disabled clients with a fair share of the settlements. Whenever regulations are enacted, it takes diligence to keep up with the cheaters.
Bottom Line

There’s never been a better time to be disabled, and I hope to be able to say that every year until I die. I’m not worried about technology—that train has left the station and can't be stopped. I am concerned about access to that technology for the vast majority of disabled people who are not wealthy. This will require diligence on the part of disability advocates, and a mixture of creativity and compassion on the part of government.

Tuesday, January 10, 2017

Inspirational Videos—Love ’em or Hate ’em?

A dear friend sent me this five minute long inspirational video. Perhaps you saw the story when it came out a couple of years ago. Please give it a watch, then come back and read my comments. For those who don’t have time to watch the video, I have provided a short synopsis below.


Synopsis

Here’s the gist of the story. Adorable and well-spoken girl born with no legs, abandoned as an infant, is adopted by a loving family. Her idol is the gymnast Dominique Moceanu. This legless girl wants to be a tumbler just like her. Amazingly, she becomes a champion gymnast and a professional acrobat. Later, she learns that Dominique is her biological sister, and they are reunited. Moving stuff.

Why I Hate ’em

There is a lot of don’t ever give up and don’t say can’t and you can be anything you want to be sentiment in these videos. I’ve ranted about our society’s love affair with this type of rhetoric (click here). When the result is positive, as in this case, these phrases are accepted as universal truths. For some people, however, the loftiest goal they can imagine is simply getting through another day. A heavy dose of acceptance is sometimes as poignant as a can-do attitude.

Why I Love ’em

How can you not love this story? Other than the cheerleader language, this is good stuff. It nourishes my soul. Seeing people’s hard work rewarded, and watching good things happen to good people, I can’t get enough of it.

Bottom Line

To the extent that these videos are heartwarming, I love them. To the extent that they are motivating or inspirational, I’m good in that department, thanks. Keep putting them up on Facebook. I’ll watch them and I’ll like them and they’ll provide me with little moments of joy. Just don’t project her attitude and her success onto me or anyone else facing challenges. I know that wasn’t my friend’s motivation when he sent me this video. He was touched by it, and hoped I would be too. I was. Thanks for sharing.

What is your opinion on inspirational videos? Love ’em or hate ’em?