Tuesday, November 25, 2014

The Social Psychology Implications of iBot Stair Climbing

Yeah, you read that right. This subject is better suited for a PhD dissertation, but instead I’ll tackle it in a single blog post.

On Saturday night Kim and I went out to dinner with our friends Deb and Steve at the Snow Squall, a local bar and restaurant that we absolutely love. I made reservations for their dining room, as opposed to the pub section where I usually sit. This would require me to descend about four steps in my iBot wheelchair.

In years past I was able to climb stairs myself in the iBot, but I no longer have enough strength and dexterity in my arms. I require Kim’s assistance. We arrived at the Snow squall at six o’clock, and the crowd was thin. Kim guided me down the stairs without incident, and we settled in for a leisurely meal.

Throughout the dinner, more patrons arrived, and soon it was a full house. We finished an outstanding meal (Chef Heather cooks no other type), settled the checks, and prepared to ascend the stairs. Allow me to describe the scene, as I imagine it from the perspective of a random patron who dared to watch:
A dashing gentleman in a power wheelchair backs up against the bottom step. A woman, presumably his much younger wife (is he rich?), strikes an athletic pose behind him, one foot on the first step and the other foot on the second. The gentleman manipulates buttons and knobs on his wheelchair controller such that the seat rises a bit and then tilts to the rear. His wife grabs onto the top of his backrest and pulls. Some motor within the wheelchair engages and boosts the front wheels up and over the rear wheels, and the chair is one step higher. This process continues until the chair, its occupant, and its navigator are at the top of the steps, at which time the gentleman pushes more buttons and knobs, and the chair transforms back to normal. Their demeanor throughout the operation is nonchalant. Apparently, this is part of their routine – how they navigate through a disabled-unfriendly world.

Here’s the social psychology implication. There were perhaps forty people in the lower dining room and another forty in the upper pub area. At least half those people had a clear line of sight to me. Yet, as I scanned the crowd, only a couple of them observed me climb the stairs in my wheelchair. Nearly every one of those people must have been fascinated by my chair’s capabilities. Why didn’t more of them watch? I would have watched.

In our society, it is paramount that we not offend others, especially people who are disadvantaged. And we are on our best manners when we dine at an establishment where the meals cost more than $15. Most of the patrons were probably concerned that watching me climb the stairs would be offensive to me or would constitute an invasion of my privacy. Maybe they thought I hated being seen this way – that I already felt conspicuous enough, and their staring would only make me feel worse. Maybe they didn’t know what they thought, but it just felt wrong to look. Whatever the reason, most of these people either completely ignored me, or they only snuck a peek here and there. What a shame. What a missed opportunity! What a gross over-application of the duty to not offend.

The fact is that I absolutely love to have people watch me climb stairs. I’m an iBot exhibitionist. I get off by demonstrating how technologically advanced my iBot is, how talented my wife is, and how cool I am about the entire process. But these people had no way of knowing this. How could they?

Maybe the responsibility falls squarely on me to let the potential audience know that they are more than welcome to gawk at us, engage us in conversation about it, and applaud enthusiastically at the conclusion of the show. The question becomes, then, how do I convey this message.

One option is for me to clear my throat and in a very loud voice announce, “May I have your attention please? May I have your attention please? I am about to climb these stairs in a wheelchair. This is something you have probably never seen before, and may never see again. I invite you to put down your utensils, grab your drink, and adjust your seats so you have a comfortable view. In no way will I consider your watching to be inappropriate. Frankly, I would be slightly offended if you didn’t watch. This is very cool stuff. There will be a brief question-and-answer period after I get to the top of the stairs.”

In a perfect world, devoid of unnecessary human insecurities and burdensome social constructs, this would be appropriate behavior. But, frankly, I don’t know if I have the cahones. What if everyone ignored me and just continued dining? What if I came off as needy and insecure? What if, what if, what if? No, I think I’ll forgo the opportunity to be an agent for social change, and just keep doing my thing without drawing attention to myself. It’s just too risky.

Note: For those of you who have not seen the iBot in action, click here for a video of us in Jamaica last year, or watch below.

Wednesday, November 19, 2014

My Wheelchair Van Adventure

Sometimes things go smoothly with auto repairs. Other times, things just get weird.

In Maine, automobiles must pass an annual safety inspection. Our two-year-old wheelchair accessible van was months overdue, placing us at risk of being issued a ticket. On Saturday of last week, we finally scheduled an inspection.

The van failed due to excessive wear on its two front tires. The rear tires were acceptable. When we got home, I called a number of stores to compare prices. The last place I spoke with had a fair deal, $140 per tire for a high quality product. Kim stood beside me and whispered, “Ask them if that is the installed price.” I did. It was. I made an appointment for one o’clock the next day.

The pre-Christmas shopping crowd was out in force on this Sunday in mid-November. Parking spaces in this busy part of town were difficult to find. But our van has handicapped license plates, so we parked in the front row, like we always do, and walked into the tire store.

“My name is Mitch Sturgeon, and I have an appointment for my van.”

“Yes, I have your information right here. It looks like you’re all set. We are very busy today, so please give us a couple of hours.” We had plenty to do nearby, so the wait would not be a problem. For at least the fifth time in the previous couple of months, I went to the Verizon store and fondled a new iPhone 6 Plus. This time I succumbed to its charms. My new phone should arrive tomorrow.

When we returned to the tire store later in the afternoon, we were delighted to find that the work on our van was complete. We expected a bill of around $300. “That will be $748,” the mechanic said, cheerfully.

“I’m afraid you have the wrong bill. We just had two tires changed,” I responded, matching his cheerfulness. I wasn’t at all concerned. He had obviously picked up the bill for some other vehicle that had a brand-new engine installed. Common mistake.

“This is the right one. Changed four tires on a 2012 Dodge Grand Caravan…”

Smiles faded. Attitudes shifted.

“No, no, no. I explicitly told the gentleman I spoke with on the phone yesterday that I wanted to change the two front tires. Somebody screwed up,” I said.

And Kim added, “Even then, I thought these tires were supposed to be $140, installation included. How do you come up with $748?”

My wife is a very tolerant person. Give her slow service at a restaurant and she will teach you a hard lesson by cutting your tip from 20% to 18% (and then rounding up to the nearest dollar). But don’t even think about charging her full price for a beer she ordered five minutes before the end of happy hour. She studies every check to make sure we are never overcharged.

I instructed the mechanic, “I need you to put those two rear tires back on the van.”

“I can do that, but you should know that those rear tires are bald also.”

“All four tires are bald?”

“Yes, all four tires are bald.”

“Please show me these bald tires.”

“All four tires?”

“Yes, all four bald tires.”

When we eventually found the tires in the tire trash heap, it was clear to me that two of them had a lot of tread left and two didn’t. The mechanic disagreed. He tried to give me a lesson on how tires wear. I wasn’t buying it. We agreed to disagree. I again insisted that he put two tires back on. Kim again insisted that we address the issue of the extra charges over and above $140 to per tire, no matter how many tires we purchased.

And then we got the break we were waiting for.

“My manager has authorized me to work with you to figure out a way we can keep those four new tires on your automobile,” the mechanic said.

First, Kim went after all the extra charges – balancing, installing, valve stems, disposal fees, roadside assistance insurance for flat tires (I’m not kidding), and double time labor rates for Sunday installation (I think I’m kidding). I went after him for their negligence in installing two tires too many. We talked him down to $450 for the four tires. Kim and I decided this was preferable to putting a couple of two-year-old tires back on the van.

All was forgiven. Smiles returned. Friendly banter resumed.

I sometimes wonder if I benefit from the “cripple factor” in negotiations like these. I hope not, because I despise the idea that people may feel pity for me. I don’t think of myself pitiable. But if people do cut me some slack, it may a legitimate manifestation of karma (I don’t believe in the mystical, universal scorekeeper manifestation of karma).

As we walked out of the store toward our van, a most disturbing thought popped into my head. At first I tried to suppress it, but my conscience wouldn’t allow me to. Next, I tried to keep it to myself out of embarrassment, but it was too juicy not to share with Kim.

“You know, I called so many tire places yesterday…I’m not sure I ever told these guys I wanted two tires and not four.”

Kim stopped walking, turned toward me, and considered the implications of this potentially game changing admission. She responded with, “Don't feel guilty for one second. They still tried to screw us with all those extra charges and by telling us our rear tires were bald.”

That’s my girl.

Wednesday, November 12, 2014

Wheelchair Accessible Path Installed around Cobblestone Street in My Neighborhood

As I mentioned in my September post entitled Our Love Affair with Cobblestone Streets and Brick Sidewalks, for years there has been a cobblestone street impeding wheelchair access to the Casco Bay Bridge, which connects Portland and South Portland. I took up the cause in May 2013 with this video posted at mycounterpane.com:

I spoke with the city manager and he liked my idea in principle, but wanted to make it a walkway through the adjacent Thomas Knight Park instead of over the top of the cobblestones. This wasn’t ideal, but it would still be a huge improvement.

In April of this year, the city manager informed me that funds had been allocated for this project, and it should be completed during the 2014 construction season. I announced this at mycounterpane.com:

They cut it close – winter is almost here – but the ADA compliant path is now installed! I am going to enjoy my new access immensely next summer, as are all the other wheelchair users in the area.

The effort took 18 months from inception to completion, but it's extremely satisfying to see an idea like this come to fruition.

What did I learn in this process?

Here are my tips for campaigning on access issues where you live:

1. Speak up!

Keeping it to yourself or only complaining to friends does no good. Find out who gets things done in your community – a councilperson or city manager – and speak or write to them. Be friendly, and find something to compliment them on, and then present your case for improved access. Make it about the community, not just about you. Be as specific as possible. Offer to meet city officials in person, ideally at the site of the proposed accessibility project.

2. Follow through!

If city officials commit to considering your issue, follow up with them regularly. Be polite but firm in your tone. If you are not getting results, speak with other city officials, community organizers, or disabled advocacy groups. Don’t give up if one or two people are not cooperating.

3. Look at the details!

Be certain that the proposed solution is acceptable to you. Don’t assume because somebody says they can fix a problem that the solution is actually a good one. If possible, be present during construction. Again, persistence matters.

4. Celebrate your victory!

Write thank you letters to everyone involved. See if you can get the local newspaper to write a story. This will encourage city government and property owners to cooperate with requests like this in the future, and it will encourage other disabled people to speak up.

Note: You earn bonus points if you noticed two things about the last video. First, yes, I am in balance mode in my iBOT wheelchair. Second, yes, my ride down the new trail is displayed at double time. The iBOT doesn't go that fast in balance mode!

Wednesday, November 5, 2014

My MS Symptom of the Week – Spasticity

“I can feel it building…oh yes…please don’t stop…this is going to be so good…here it comes…hold on baby…OH MY GOD,” I thought to myself. Then I let it fly, “Achoo!!!”
“Gesundheit,” said Kim.
“Thank you,” I replied.
What? I can't believe you thought I was going there.

Everyone is familiar with that feeling leading up to a sneeze. The urge builds and builds, and the last thing you want to happen is for it to fizzle out before you detonate. The sneeze itself is such a relief. It’s like a scaled-down version of that thing that mommies and daddies do under the covers (the government blog sensors made me describe it that way).

Spasticity, my MS symptom of the week, feels like a sneeze as it builds and builds. And, like a sneeze, it feels so much better when I succumb to it.

“Mitch, what is spasticity?”

I’m so glad you asked.

The National Multiple Sclerosis Society describes it this way: “Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS.”

I would further describe my particular variety of spasticity this way. Think about how it feels when you wake up in the morning and have an urge to stretch, except that my stretch is very powerful (proving that the disease is in my nerves not my muscles). I get this spastic feeling frequently now, in both my legs and my arms.

I first experienced episodes of spasticity in the winter of 2003, only eighteen months after my diagnosis (and blogged about it here). I was walking around the streets of Nashville, Tennessee with a client. It was a cold night, and that triggered stiffness in my legs that even my companion could notice. It was almost like I was goose step marching. For the next ten years or so I experienced slowly increasing levels of spasticity, but it didn’t cause any difficulties in my life. It was just an interesting phenomena.

In the last six months or so, however, my spasticity has become much more frequent, and so much more intense, especially at night. It’s affecting my ability to sleep, and it’s doing another strange thing too. After so many years of transferring myself into and out of my wheelchair, bed, and toilet, I developed some sort of a strain in my left wrist. Now, I can’t use my left arm to help with transfers, so I’m not attempting any manual transfers at all. I’ve got an appointment scheduled with an orthopedic specialist, and we’ll see what he says. But the problem is that I have a lot of spasticity in my left arm, and I often put that left wrist through powerful, painful contortions. I think this spastic activity is preventing my wrist from healing. I’m even wearing a wrist brace at night, when the most spasticity occurs, but I still experience significant pain in my wrist.

For many years I’ve taken a moderate dose of a drug called baclofen, a muscle relaxant and the most commonly prescribed treatment for spasticity. I recently increased that dosage to a relatively high 80 mg per day. The problem is that these higher doses of baclofen cause overall muscle weakness and general fatigue, rather unpleasant side effects for someone with MS – a disease that already causes muscle weakness and general fatigue.

If I take much more baclofen I may need to go to the next level, which is to have a baclofen pump installed in my abdomen, with a catheter running around my waist into my spinal cord. This is a much more efficient delivery method for baclofen, without the nasty side effects. But I’m not excited about having a pump installed in my abdomen and having a permanent opening in my spinal cord. So I will put that off for as long as I can.

Spasticity – another wonderful symptom courtesy of my favorite disease, multiple sclerosis.