Optimizing your space

Small livings spaces have a few nice benefits. They’re easier to clean, cheaper to cool/heat, and less expensive to rent or buy. Over the last few years I have adapted to living in smaller spaces and have come up with a few tips for living in smaller spaces with a wheelchair.

1) Don’t hoard.

I’ve discovered that it has become much easier to sell, donate, or throw things away that aren’t being used. Typically if something has not been used in a year, I try to get rid of it. When every square foot is valuable, it doesn’t make sense to turn your home into a self-storage facility.

2) Don’t worry about things that paint can fix.

It’s inevitable that my wheelchair will scratch a wall or a door. I have learned not to worry about this, especially when space is tight. At first I decided that once a year I would touch up those marks I’ve left on my walls. It has been four years and I still haven’t done it. In other words, I got used to it. It’s not that important.

3) Put pads on the bottom of furniture.

There are times when I need to push a piece of furniture out of the way in order to reach something. Other times I just want to move things around. Since I have wood floors, it’s better to have those protective pads on the bottom of my furniture so the wood doesn’t get scratched too much. It also helps to have those plastic sliders on furniture that sits on carpeting because then those pieces can move easily too.

4) If possible keep, your bed against a wall.

A great way to waste space is to leave a pathway all the way around your bed. Unless you have a reason for it, I suggest pushing your bed up against a wall, which can easily create 5-10 extra square feet of floor space in the middle of the room.

5) Keep it configurable.

How many pieces of furniture can you occupy at one time? Usually just one. Sometimes you never leave your wheelchair. I like to have sitting spots available in case company comes, but when visitors aren’t there, it’s nice to push extra chairs and tables out of my way. Then, the 95% of the time when nobody else is around, I can move more easily around my house.

6) Pay attention to your patterns.

If a wall or a piece of furniture is constantly getting in your way, change the arrangement. Sometimes it’s easy to get into a pattern of settling for an arrangement that isn’t really working. For example, I had my bed in a place where it was always blocking a direct path from my door to my office. Finally one day I asked myself, “Why do I make myself go around my bed 10 times a day to get to/from my office?” I was immediately able to see a new place to put the bed and now I have a perfectly open pathway.

Let’s face it, room to roam is great, especially when you use a bulky wheelchair. But it’s possible to optimize small spaces for comfortable living. Pay attention to what’s getting in your way and do something about it!

Heated clothing

Heated Vest
Heated Vest by Gerbing's

I have been researching heated clothing for a while and finally decided to get a heated vest.

Why a vest? Well I hate when I have to wear warm clothing and the extra weight on my arms makes me feel l am carrying around lead weights. So with a vest, my arms are free to move about and I can wear a light, long sleeved shirt and still be a functioning human being. The trade-off is colder arms, but I can live with that.

So I picked up a heated vest by Gerbing’s and have been trying it out for the past week. I love it!

It comes with a small battery that fits in the pocket of the vest and has several power settings. Of course it lasts the longest (approx 6-8 hours) at the lowest setting, but for the most heat you’re going to want to crank it up to full power. At that setting it’ll go for at most 2 hours, but if you’re just going in and out of the car you can just turn it on/off as needed. One concern I had was that the battery would be heavy or inconveniently located, but once I got it and tried it out, there were no problems.

The next thing I might try is the heated pad they have that you can sit on. This would come in handy for those times when I plan on being outside for some time or if it gets REALLY cold out.

One of my friends and a reader of this blog, Gord, mentioned that there is a way to create “do it yourself” heated clothing and passed along this link as well. I haven’t tried that yet, but looks like a way to get your pants blazing hot for those cold days!

Here are some other tips I have for staying warm during the upcoming winter months!

When disability is invisible

Imagine you just received an email from someone you didn’t know. The message contains a greeting, several sentences, and a closing. There’s nothing special about the message. It’s just a bunch of words strung together and composed like any other email message.

Would you be able to tell if the sender of the message had a disability?

Absolutely not.

The same goes for a phone call. Can you tell if someone uses a wheelchair because of the way they sound on the phone? Not likely.

How about art? Can you tell if a painting has been crafted by someone with a disability? Again, no.

And what about a song? Is it possible to spot someone who has no legs by listening to a recording of them singing a song? No.

There are many examples of instances when a mobility-related disability is absent from a situation. It’s not applicable. It doesn’t matter. It doesn’t change the words in an email, the paint on a canvas, or the words you speak.

Aside from physical labor and tasks, why does having a disability have to matter at all?

That’s right, it doesn’t have to matter.

5 Things to train people around you to do

Cartoon by James True

There are some things about having muscular dystrophy or any disability that require you to train the people around you so that some things become automatic. I’m not saying you need to have a training class and you should never expect everyone to be at your disposal, but there are situations that arise which offer opportunities for you to tell people why you need something the way you need it. Then they’ll remember next time.

For example, people will serve me beverages in whatever cups they want to unless I specify, “If you could please put it in a plastic or lighter cup, that would make it really easy for me to lift it and drink it.” Not only am I asking for what I need, but I’m telling them why I need it that way. This seems to help people make the connection and remember it for next time. Remembering to say “Thank you ” for the accommodation is also an important thing to do.

Here are a few things I’ve noticed recently that I’ve had to train my friends/family to do over the years.

1) Serve my drinks in the lightest cup/glass possible

As I mentioned, reducing the weight of a cup makes it much easier for me to drink whatever is in it. Light, thin plastic cups work great. Heavy beer mugs or coffee cups do not. True, a straw would be helpful but not everyone has straws at their homes. Also true is that the amount of beverage could be reduced, but then who wants to do that?!?

2) Keep me warm

I hate being cold and am prone to being colder than everyone else around me. If someone wants to open a window, I don’t even have to ask for a blanket anymore. Same goes for a group event that is outside. My family knows they’re gonna have to sit me right next to the grill or the campfire or cover me in blankets. It’s almost automatic. I also carry my own extra blanket in the car and have been investigating heated clothing as well, so I can keep myself warm too.

3) Help me with food

In buffet-style situations, I’m not the most adept at putting food on my plate. So at parties or restaurants where food is self-serve, it’s an automatic. If I am feeling particularly healthful that day, I can also tell the person helping me to keep the portion size small and therefore restrict myself from eating like a pig.

4) Get out the ramps

There are a few places I go where my friends/family meet me at the car to grab my wheelchair ramp when I arrive so I can get right into their homes. This works really well when it is cold out because I can just wait in the warm car until the ramps are all set up!

5) Know when not to help

There are times when I don’t need as much help as people might assume. It’s also important to politely train people to know what you don’t need help with. For example, I’m not a baby bird and don’t need my food chewed for me first! But if someone offers to do something like cut my steak for me, I politely say, “Thank you so much for offering, but it’s great exercise for me!” or something to that effect.

Part of the reason this “training” is important is because it helps me feel more “normal” and less high maintenance in future interactions with people. When I don’t have to ask for something, I don’t feel like an inconvenience but still feel special because someone remembered. How have you “trained” the people around you to help you out?

Be your own advocate, productively

There are times when it seems like things take forever, from planning something to securing funding, to hearing back about a job interview. The easy thing to do is sit there and wait for something to happen but I’ve learned over the years that it’s important to keep communication coming from your end in order to make sure things proceed in a timely manner. Here are some tips and tricks for being your own advocate whether it pertains to your disability or life in general:

1) Remember you’re not the only one

Because something is important to us, it’s easy to assume that our issue MUST be the most important thing on the other person’s plate. But the fact is that people like caseworkers, insurance representatives, non-profits employees, and corporate representatives have a lot on their plates. They may be servicing a lot of people. Some people are really good at keeping you in the loop with their progress, but in my experience, most are not. So remembering that you’re not the only one accomplishes 2 things: First, it gives you permission to follow-up within a reasonable time frame if you’re not being helped. Second, staying aware that you’re not the only one keeps you grounded. Sometimes it’s not all about us. This allows me to focus on the next tip…

2) Stay positive and stay thankful

Unless someone you are working with definitively wrongs you in some way, then it’s best to stay positive and grateful with whomever you’re working with. Are you more likely to help out someone who is nice to you or someone who just yelled at you? I always exude gratefulness with anyone who is working to help me in some way, especially when I am following-up on something they may have forgotten about or have been just too busy to take action on. This is especially important when the person helping you is bound by laws or restrictions that are beyond their control. Sometimes the bureaucracy is not their fault.

3) Know when to escalate

If you’re working with someone who may not seem like they can get the job done, don’t be afraid to ask for a manager or supervisor. If you start to feel like you’re getting the run-around, then by all means ask to speak to someone else or call that person directly at another time. For me this usually boils down to a gut feeling that “Hey, this person isn’t going to be able to help me…” and I move on to someone else.

4) Offer to help however you can

If paperwork needs to be filled out or something else needs to be done, then offer to help! It may get things done faster, especially if it’s something important to you and you’re willing to spend the time on it. This also creates a feeling of good faith and teamwork with whoever you’re working with.

5) Don’t give up!

If being nice doesn’t work, then by all means, you are allowed to complain! But only to the right people and only if you are completely informed about the situation. There are times when actual laws need to be followed in order to provide accommodations or services. Asking about why there’s a delay or what you can do to get things done faster is a good place to start here. If that doesn’t work, then be a pleasant pest. In other words, be polite and thankful but be FREQUENT with your inquiries about status — especially if it’s just a matter of finishing paperwork or getting an approval. Rarely have I gotten to this point myself, but one time I was leaving pleasant voicemails every day or two on someone’s phone in order to keep them moving on my issue!

Naturally, every situation calls for different tactful measures to make things stay on track. But the above tips have worked for me on several occasions. If you have your own tips, feel free to share them in the comments section!