The Present Moment from Will Suto on Vimeo.

Windstar does not discriminate against persons on the basis of disability. We seek, to the extent feasible, to accommodate the needs of persons with disabilities. There are no elevators on the Wind Star and Wind Spirit nor were the ships originally constructed to be wheelchair accessible. As a result, these three ships may be unsuitable for people relying solely on wheelchairs. The Wind Surf is equipped with elevators, but staterooms are not wheelchair accessible. Also note, there is no elevator access to board the ship. Certain ports require the ship to anchor; in this case guests must be ferried into port. Service animals are permitted on board ships if prior arrangements have been made at time of booking. In limited situations where an individual with a disability would be unable to satisfy certain specified safety and other criteria, even when provided with appropriate auxiliary aids and services, we may find it necessary to ask the individual to make alternative travel arrangements. It is essential that Windstar is notified of any special medical, physical or other requirements you may have at the time of booking.

So no elevators to get on the ship that has elevators. And even if you get on that ship, your stateroom isn’t going to be accessible either. And at any time they could tell you to make your own travel arrangements? Isn’t this pretty much saying, “Don’t bother cruising with us?”

I had to post this because it is one of the most blatant examples of  actions speaking louder than words. If you are not taking steps to make your business accessible, then you ARE discriminating, no matter what you FAQ says.

So needless to say, I won’t be cruising on Windstar…

Anybody have any good British Isles cruising tips?

What I realized, was that many of the things that make me mentally uncomfortable are things I should be doing or things that would benefit me directly. For example, I can be a little bit too accommodating when something doesn’t go my way. If something does fit right, I might deal with it instead of return it. If a hotel room isn’t perfect, I might not say something. If a coupon is rejected, I might not escalate it to the manager if I think I have a case. I go with the flow.

But avoiding an uncomfortable situation that involves the slightest bit of confrontation is probably not in my best interest. I should do what makes me uncomfortable.

Another example is meeting new people. Once I am talking to someone I am fine. I can hold a conversation. But for some reason I feel intimidated or overwhelmed about meeting new people or starting up a conversation. This definitely makes me uncomfortable.

But starting a conversation can lead to a lot of things, like learning a bunch of new information, meeting someone cool, or finding a business prospect. All of these things are benefits, not drawbacks of talking to someone new. So why don’t I do it more often?

As it pertains to muscular dystrophy, there are times when it can feel uncomfortable asking for an accommodation or asking someone for help. I still feel this at times even though I’ve gotten much better at it in recent years. But this is something I think a lot of people feel when it comes to a disability — they don’t feel comfortable asking for help or asking for what they need. But by doing so, there is a lot to gain — independence, freedom, fun, you name it.

Overall I am starting to learn that I should definitely avoid being physically uncomfortable, but I should try to make myself mentally uncomfortable more often. In my experience, the discomfort either was unwarranted or subsided dramatically after time and practice.

What makes you uncomfortable?

When I go grocery shopping the cashiers are usually nice and super helpful. The people that bag my groceries are always accommodating, whether that means handing me the bag off the check stand or putting the bags on the back of my wheelchair. If something is too high on the shelves, I’m never met with disdain in asking for help getting it.

At department stores, same deal. I also have no trouble returning things or dealing with exchanges. People are nice. If I need help carrying something out, they find somebody. Same thing at gas stations. If I need help, I get it. Thankfully the station nearby is very attentive and comes out to pump my gas for me when they see my van and disabled parking permit.

Whenever I get my car serviced, I am met with nice, accommodating people. Same thing at the movie theater, the museum, auction houses, and pretty much anywhere I go. Have I had some weird experiences with service, sure. But nothing to get crazy about.

I started to think that maybe I am getting great service because I am in a wheelchair? I’m guessing the people might look at me and feel sympathy or empathy, or even pity in some cases and feel like they should be extra helpful. Maybe this is the case. But what I realized is that I get great customer service even when I am on the phone with someone and they have no idea I have a disability.

So now I think it has more to do with my demeanor and how I treat the people I am dealing with, than just my disability. So here’s how I deal with people when I need customer service:

1. I am grateful and thankful. Words like “Please” and  ”Thank You” are free. Whether or not you think someone is going out of their way to help you, a gracious “Thank you so much” — sometimes even in advance of their helping you — can go a long way.

2. I am patient. I realize sometimes people are having a bad day. For example, the cashier at Target the other day had a toothache. Haven’t we all been there? It’s bad enough when you’re sitting on your couch with an aching tooth. Here she is standing at a Target all day. She’s allowed to be “not at her best.” So I empathized with her and before I left she actually had laughed.

3. I don’t judge. On a few occasions, a snap judgement about a customer service rep actually changed my attitude as I went into the transaction. To assume someone is going to be unhelpful just because of how they sound or look is a horrible way to get started.

Did I mention I’m thankful? After a transaction, be just as gracious as you were before.

Yes you’ve probably got your customer service horror stories. How many do you actually have, however, that come to mind? 1? 2? 5? 10? If you’ve got only a handful of stories, consider how many interactions you’ve had in your lifetime. It’s likely a small percentage.

If you’ve got more stories than that, are you sure you’re approaching these transactions properly?

So I finally got back in the pool last night and already have come up with a list of a few challenges to tackle:

1. Improve my arm range of motion so I can reach back far enough to have an effective back stroke.
2. Figure out a way to sit back upright after floating on my back
3. Remember how I flip myself over after floating on my stomach.
4. Figure out how to change out of my gear in less than 15 minutes and get to the car without freezing!

After getting home last night and rinsing off all the chlorine, I felt great. It was nice being able to get back to the pool. Try it sometime! Bring along someone to help you if you are nervous about it!

I was able to attend the Becker MD conference in Chicago. I started participating in a mentoring program for people with Becker muscular dystrophy. The telethon came and went. I started reading lots of great posts on muscular dystrophy blogs and the BMDers facebook page. I was asked to participate in a support group via Skype (which will be cool!)

I think I’m just overwhelmed by all the focusing on muscular dystrophy lately. It’s not that my condition is any worse or that I’m frustrated with anything physical. I think my brain only has a set amount of space to focus on it and it’s overloaded.

I’m happy that my motivation to post something today must mean that it’s all clearing up, which is great. So now I can get back to adding some good content to this site, especially since I’ve had a lot to think about lately!

I find myself wrapped up in fear sometimes without even thinking. Whenever my mind wanders down that road filled with “What if?” questions, inevitably the questions revolve around fear. “What if there is no ramp?” “What if I get stuck?” and so on.

Asking those questions are important…ONCE. Being prepared is a great thing. But if you have created your methods for being prepared, then it’s a waste of time asking those fearful questions ever again. Usually those questions end up becoming an excuse not to do something.

It’s a great thing to ask different types of “What if?” questions — questions like, “What if I go and have a great time?” “What if I meet someone new and exciting?” “What if I learn something awesome?”

Those questions always seem to have different answers…which is why I love them!

For example, I was looking for dentists this week and started calling around. The first place I called said that their building was accessible but their individual rooms were not. The second place I called had a nice website with pictures of the rooms and when I called the receptionist said that many people come in with wheelchairs and transfer easily to the patient seats. Appointment booked. The first dentist lost my business.

Last week I went out for pizza with friends to a place I’d been to as a kid. But upon getting there, the front entrance had a step about three inches high. There was no alternate entrance. They had no ramp. My uncle went in and got a few phone books but this still did not work. Since a bunch of people were meeting there, we couldn’t easily change locations so we ate outside even though it was sprinkling rain. But I will not be going back to that restaurant ever again. I’m currently working on a nice letter to them about improving the step, but I probably won’t be going back even if they do fix it.

Downtown Milwaukee has a lot of old buildings filled with bars, restaurants, and shops. However if I am cruising about the streets and there’s a step to get in your front door, I don’t waste my time trying to find an alternate entrance. I move on. I can’t even count how many businesses might have lost revenue from me and others like me when I am simply out and about. This happens all the time with restaurants.

Even when businesses go above and beyond to accommodate my visit and make their location temporarily accessible, I hesitate to go back. First, I don’t really like to patronize places that aren’t accessible just on principle. But even if a location can be made accessible for me via a temporary accommodation, it’s a mental hassle to ask them to do it. In fact, there are VERY FEW places worth the effort in a world with so many options.

Some businesses make it easy for me to spend my money. Usually these are national chains. However, many small businesses in my area do make sure they have accessible facilities and I appreciate that. They earn my business over and over again. Even when an accessible business has a minor hiccup — like a local Noodles & Company whose bathroom door was REALLY heavy such that I had to wait for someone to come in so I could get out — I will still return because the management was receptive to my comment about the door and fixed it.

I would estimate that I have shifted my spending at least 50 times in the last five years. Depending on the item (auto repair being a huge one, this upcoming dental visit likely another), the amount of money adds up. I’d estimate I have shifted at least $5,000 during that time from places that were not accessible to those that were. Considering how many millions of disabled people there are in this country, that adds up to be a lot of money NOT spent at inaccessible places — in the billions.

What’s it worth to make your location accessible right now and get part of those billions coming through your door? Making your business accessible now means it’s accessible as long as you’re at your location. That’s an unending stream of revenue just waiting to be tapped. And if you’re thinking, “But I never see any disabled people in my store, why should I make it accessible?” then you need to look at that question again and realize the answer is “They can’t get in, so how would you ever see them!”

First of all, the news is about money. It’s about selling ads. So news stations try to get you to watch the news by teasing your brain with promos that could easily tell you the news right then and there but don’t because their ads run at 10 so you have to watch then. Think about how often you’ve heard something like “Find out what household appliance might be putting your kids at risk!” or “Will the hot weather clear out for the weekend?” followed by, “Find out at 10!”

Why couldn’t they just tell us right then and there that a blender with spinning blades could cut your child’s fingers off (duh) or that the hot weather WILL clear out for the weekend? Because they have to sell ads for a half-hour at 10 and don’t get paid unless you watch.

Online news is the same way. Headlines for online news have changed over the years. Now you will see a lot of questions in the links they want you to click on, like “What celebrity is in town for the weekend?” or “5 reasons you should worry about your stock portfolio.” It’s all about questions and lists nowadays. They could easily say, “Johnny Depp in town for premiere” but then you don’t have to click on it to find out what they could have told you with less words and punctuation. When you click they can show you ads and make money. If you don’t click they don’t make money. (FYI, my original title to this article was “Why I hate the news” which I promptly changed to its current, more descriptive title to save you time, but you obviously wanted to read more, so thank you! I have ads on this site but my main goal with this site is not to make money!)

Next, the news is about worry and fear. Next time you watch the news or visit your local news website, count how many of the stories you see that could create fear within you. Sometimes even the “feel good” stories invoke fear — sure everyone in the community is helping out a kid with cancer…but then you worry YOUR kid could get cancer too! I guarantee you will run out of fingers to count on if you are looking for instances of fear in the news.

The news will tell you about whatever bad things have happened to other people, their children, or their neighborhood. They’ll tell you what restaurants are dirty and what corruption is being investigated. You’ll worry about your kids, your neighborhood, your politicians. The only REAL news during a 30 minute newscast is the sports news which is probably the most based in fact and matter-of-fact as you can get. But the problem with sports news is that I don’t need commentary on the scores. The score tells me all I need to know and any analysis is a waste of my time (This is why I can’t stand Sports Center). The weather is also not the news during a newscast. If you want to know what the weather is, go outside. If you want to know what the weather is going to be like, you can bet that your local weather man will get it wrong most of the time anyway and ruin your life in the process. Check out my post about weather predictions. If anything else, the weather man might tell you it’s going to rain so you will stay inside and then watch the news so they can make more money on ads!

So what does this have to do with muscular dystrophy? It doesn’t — directly. It has to do with how you feel about muscular dystrophy. A newscast seems designed to find things for you to complain about. That’s often how some people feel about their disability. It’s annoying. Like watching the news, it’s not a good use of your time. News should be something useful. When dealing with muscular dystrophy, news should be about what devices are good for you, the places you can go and things you can do despite having muscular dystrophy, and all the other positives. That’s what I try to do with this blog.

Don’t be like the weather man who always forecasts rain. Look for the sun. Look for the positives in your life. Make up a newscast about yourself and think about all the positives instead of the negatives. We are so programmed to think negatively, I just can’t stand it. I am still guilty of doing it at times. But I am conscious of it, at least in hindsight. So nobody is perfect when it comes to this. All that matters is trying. So try. It’s easier to do when you don’t watch the news, trust me.

If you need more reasons to avoid the news, check out this great post about going on a news diet by James Altucher (who also has some other great advice!)

If a pool is not accessible, I sit there and watch everyone else splash around and play. I try to overhear their jokes, get irritated by a loud game of “Marco Polo,” and often sit and read while occasionally getting splashed by someone’s cannonball. It’s not that great.

Sure I could roll over and dump myself into the pool from my wheelchair. But then what happens when I want to get out? That’s the hard part. I’m wet and slippery and I usually end up getting my butt scratched by the side of the pool or the steps while I am aggressively yanked on by family, friends, and the occasional passer-by. It’s not easy and sometimes the fun isn’t worth the blood.

So when there is not an accessible lift at a pool, I rarely go in. I rarely have as much fun as everyone else.

Let’s be real for a minute. I understand there are things that a physically disabled person won’t ever reasonably be able to do without the help of other humans — for example mountain climbing. I would never expect a national park to put in a chair lift so I could climb Mt. Ranier with my friends. That seems ridiculous to me because it’s not something the average person does every day. Unfortunately that appears to be the level of ridiculousness that the hotel industry feels about pool lifts.

But a pool lift is not nearly as ridiculous. Using a pool is a common everyday thing that people do. It’s something that I would do if the hotels I stayed at had pool lifts.

The hotel industry needs to look at it like this. If there are stairs to get to the front desk and I can’t reach the front desk, then isn’t it reasonable for them to have to put in a ramp? Of course they will because how am I supposed to check in and give them my credit card if I can’t reach the front desk? Sure they might bring down a clipboard or set up a special accessible check-in desk. But it doesn’t work that way with a pool. They can’t accommodate me by improvising something. And surely if they won’t put in a chair lift they’re not going to build a special accessible pool. If part of the hotel frequented by guests is not accessible, it needs to be made accessible. No matter how many reasons the industry might throw out there about “child safety” or whatever else they pull out, the only real reason is money.

I was not alive during the times when signs like “Whites Only” indicated that black people could not use the same facilities as whites. Even though the signs are gone, there are still instances when tacit discrimination exists and is accepted, unfortunately. For me, pool accessibility is one of those instances. There might not be a sign but when there’s not a pool lift, my brain sees “You can’t go in there.”

For more information about hotel pool accessibility, check out this Speak Out page. You can also find a list of hotels to boycott if you are interested in using your wallet to help make a change.

Wouldn’t it be fun though if all disabled hotel guests requested hotel assistance in getting in/out of the pool when there was not a lift? Think about that for a minute! I could call up the front desk and say, “I want to get in the pool. Send down four guys and make them stay there until I want to get out.” I am sure if that happened often enough there would be costs incurred in lost time. Then not to mention lawsuits when hotel staff is not trained in lifting people and drops them.

Wouldn’t it just be easier to spend a few thousand bucks to put in lifts? Yes it adds up across hotels, but so does the aggregate cost of lost business, wages, and lawsuits.