Category: Everyday Life

Everyone needs tools, not just disabled people

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Many people with disabilities use assistive devices like wheelchairs, canes, walkers, special software, glasses, hearing-aids, reachers, or other tools to help with day-to-day tasks. These tools are often invaluable to maintain a certain standard of living and productive lifestyle. My particular tools of choice are an electric wheelchair, a good reacher grabber, and my accessible van. When I first started using these tools I was somewhat self conscious of because not everyone else had to use them too. But now I’m starting to realize that while I use these tools to manage my day-to-day lifestyle, all people have their own tools they need to do the same.

Take a calculator, for example. I have seen people whip out calculators for the easiest of calculations. I have seen people struggle over computing the tip on a restaurant bill. Many people need help with these calculations and rely on paper and pencil, or a calculator, to do them. There’s nothing wrong with using these tools, but whereas I need a wheelchair to get around, I don’t need a calculator to compute 15% and for that, I’m thankful.

So if you ever start to get frustrated with all the tools you have to use, think about all the other tools you don’t have to use to live your day-to-day life. Maybe your job doesn’t require a shovel or a pickup truck or a hammer. Maybe you don’t need to consult your address book when you’re sending out a letter because you’ve got a great memory. Maybe you’re a wiz at vocabulary and rarely need a dictionary. Maybe you can put together an engine without a manual or have perfect pitch and don’t need a tuner. Maybe you can throw together a recipe by memory and taste without having to consult Betty Crocker. The list goes on and on.

Be proud of what you can do without needing assistance, especially if you are having difficulty accepting the times you do need it. All people need assistance at some point. It’s not a disability thing, it’s a human thing.

Reduce stress about your mobility issues

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The end result of checking out maps, making calls, renting a jeep and off-roading it on the island of Lanai.

Do you ever get stressed out about venturing to a new place because of access uncertainties? Although I have traveled and done a lot of new things, I still get a baseline level of stress whenever I am going somewhere new. Whether it’s a new city, a new sporting venue, or even just a restaurant, there are situations that can stress us all out. Here are a few tips about how to deal with mobility-related stress and new places:

1. Look at a picture

With Google Street View you can see many places as if you are standing right in front of them. I find that when I am going somewhere new, it helps immensely to reduce my stress if I simply look at the street view of the place. It’s a great way to scope out steps, parking spaces, entrances, and even what happens to be next door! I also like to use street view to check out regular streets in other countries just to remind myself that these places are often just as accessible as the U.S.!

2. Call in advance

If looking at the picture doesn’t calm you enough, then calling somewhere ahead of time is a great way to reduce stress too. For example, a few years ago I was nervous about going to a concert during Milwaukee’s Summerfest down at the lakefront. I called ahead and discovered that they actually have special volunteers who take disabled guests from the ticket gate all the way up to their seats and also answer any questions along the way. This really eased my nerves. Often times if you call ahead then the good places will be prepared for you and even keep a look out.

3. Remind yourself you’re not the first person to ever go where you’re going.

This is a trick I use when all else fails! I have mentioned this before in my blog, but it bears repeating. If you are really starting to freak out about how something is going to work out then take a deep breath and remember that you’re not the only person or disabled person to ever do what you’re about to do. Unless you’re planning on cutting a path through a nearby forest or take a trip to the dark side of the moon, you’re not going to be the first person going where you’re going. Others have gone and managed. You will too.

4. Get there early!

If you’re ultra concerned about accessible parking or getting into a place or other logistics, the best thing you can do the day of your new adventure is get there early! If you know you have ample time before the event then you’re not going to freak out because you can’t find a parking space or you don’t know where the accessible entrance is.

Do you have any tips you use to calm your stress when you’re going somewhere? If so, please post them in the comments section.

Disabled people live everywhere

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I was daydreaming about going to Europe and caught myself hesitating. A slight fear crept in that was rooted in the phrase, “How will I get around?” I hate it when those sorts of fears creep in but I love it that I am now able to control that fear by reminding myself that disabled people live everywhere. Why wouldn’t I be able to get around in my wheelchair wherever it is I want to go? Other people who live there do it every day.

Logistics are a common concern for everyone, disabled or not. There are some logistical issues with traveling to unknown places like: “How will I get from the airport to my hotel?” or “How will we get around the city?” The key to getting over these questions is remembering that there are answers to these questions no matter where you plan on going. How do I know this? Because people move about the Earth all day every day and many of them do it in wheelchairs, with walkers, canes, etc. Some are deaf, some are blind. These people can do it, so why can’t you?

Think about how you get around your own city for a minute. Is it scary? Probably not. Or at least not as much as an outsider might fear. Someone said to me once, “I really want to go to Hawaii but I am afraid about how difficult it will be to get around.” I first laughed out loud but then said, “You have nothing to worry about it, I do it every day!” The funny thing is that the person saying this was able-bodied!

Fear of new things and places is common. But if you find yourself deterred by fear, remind yourself of the following:

Someone else does this/that every day! I can do it!

Now go plan your trip.

I can’t believe I’m …

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Have you ever said to yourself, “I can’t believe I’m doing this right now!”

If so, it’s likely you were doing something new, different, out-of-character, or fun. Sure sometimes it could be said in a not-so-great context but in my experience, the times I’ve said it have usually been times when I was doing something great. I was having fun, learning something, and changing all at the same time.

I recall several times when I’d be driving from tennis tournament to tennis tournament and spontaneously say out loud, “I can’t believe I am driving to a tennis tournament right now!” Ten years ago that’s not something I ever would have said, much less done. It was a great feeling.

I’ve had several other moments like this. For example:

“I can’t believe I’m in this helicopter right now flying over a waterfall on Maui!”

“I can’t believe I’m on a boat about to see the Statue of Liberty!”

“I can’t believe I’m living in Hawaii!”

There are many more.

If you can’t recall saying something like this in the recent past, maybe it’s time to step outside your box and do something so unbelievable that not even you can believe you’re doing it!

5 positives about transition in progressive muscle disorders

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With any progressive muscle disorder you’re in a constant state of transition whether you realize it or not. It all depends on the time frame. For me, I need to look back a year or more to see that yes, in fact, my disorder has progressed. For others the timeline might be shorter. Here are five things I’ve learned about transition and progressive weakness.

1. I adjust without even knowing it.

It’s only when I am really paying attention to how I am moving or doing something that I might realize, “Hey! I am doing this differently than I was a year ago.” For example, I noticed recently that when I put on a shirt I tend to gravitate towards my desk so that I can use my elbows to get the shirt up over my head. I rarely did this before. I can still put a shirt on without using a desk but for whatever reason I must have subconsciously realized it was easier.

2. Transition gives me time to psychologically adjust.

Unlike someone who is perfectly healthy one day and paralyzed the next, I have had the luxury of a very slow transition. Along with the physical adjustments, my brain seems to change as well so that I maintain the same positive attitude despite the physical changes. It’s as if I am given time to mentally accept a change, often before I realize a physical change has happened.

3. A slow transition means time for planning.

I know that my needs in ten years will probably be different than my needs now when it comes to my physical surroundings, vehicle, assistance, etc. Thankfully I can plan for these things both mentally and financially. If I know I will need a different vehicle setup in 10 years, I can save for it now. I can also keep my eyes out for new technologies that come up that I might need in the future even if I don’t need them now.

4. I pick up new hobbies.

When I wasn’t able to play regular tennis anymore I gave up on tennis for many years. During that time I discovered new things like painting, creating song mash-ups, new books, and other new projects that I might not have discovered if I was constantly playing tennis. I learned that there are always new things out there to get excited about. Eventually I started playing wheelchair tennis which was yet another whole new adventure.

5. The people around me adjust right along with me.

For the most part, the people in my circle of family and friends seem to adjust with my change in needs as well. There’s nothing shocking about my disorder to them because change happens very slowly. In this sense I don’t think they feel sorry for me and they are simply along for the ride as well.

Overall I am grateful that the progression of my disorder is very slow. Being able to reflect on this as a positive is a something I think only happened after I was able to fully accept having muscular dystrophy. Is there anything you’ve learned about the transition in your disorder that you see as a positive?