Wednesday, July 24, 2013

10 Tips for How to Socialize with a Wheelchair User

Despite my disability, and to a certain extent because of it, Kim and I remain social animals. We love spending time with friends, in our home or occasionally out on the town. I’m sure I’m not the only wheelchair user who feels this way. However, due to our accessibility challenges and other health problems, socializing with wheelchair users (WUs) is tricky business. So that you do not become frustrated and avoid us altogether, I offer the following tips to help things go more smoothly when hanging out with WUs.
1. If the proposed venue is not obviously wheelchair accessible, let the WU be the judge. We will conduct an investigation and ask the questions necessary to be satisfied one way or the other.
2. Don’t forget that it is not only entrances and general gathering areas that must be accessible. WUs also need an accessible bathroom.
3. When you invite WUs out, we must take into account a variety of issues before deciding on a response. If we decline the invitation, don’t take it personally, and don’t be afraid to ask again next time. Also, if we accept and then decline at the last minute, again, don’t take offense. We may simply be having a bad day.
4. Disclaimer – this step requires an unusual degree of tact and finesse. When socializing, check in with the WU or his companion/caregiver on occasion to make sure that all is well. But don’t overdo this, or it becomes difficult for us to feel at ease with the group.
5. Remember, in a large group it is easier for you to rotate by once in a while and visit with the WU than it is for the WU to circulate and visit with you. I tend to stake out a corner of the room and remain stationary for long periods of time. Make a mental note to seek us out for conversation.
6. Don’t assume that because a WU can’t drink or eat like you that we are not enjoying ourselves. Oftentimes our disability simply doesn’t allow such indulgences. Encouraging us to consume more, although well intentioned, is not helpful.
English: Mannequins wearing jeans in Sânnicola...
(Photo credit: Wikipedia)
7. Many WUs do not have the ability to raise themselves up to eye level with standing people (I am fortunate to have this feature on both of my wheelchairs). If you want to enjoy quality conversations with WUs, then please pull up a chair. Similarly, when you are in a standing conversation with a group of people, try not to physically exclude the WUs, blocking our line of sight to the rest of the group. You may think your backside is attractive, but in almost every case we would much rather look you in the eye. Open up the circle so the WUs can participate.
8. If the WU needs to leave early, it’s probably not because we didn’t enjoy your company, and there is probably nothing in particular wrong. Paralysis often comes with other health problems that prevent extended socializing. I am grateful for any amount of socializing that I’m able to do.
9. If our accessibility restrictions are simply not going to work with the activities and venues that you have planned, then please don’t invite us in the first place. That’s okay. We’ll catch you next time.
10. Reminisce. Tell jokes. Laugh out loud. We need that. Some of the allure of socializing for WUs is the ability to temporarily forget our troubles. And really, to a large extent isn’t that why everyone socializes?
Let me share with you two quick stories, the first one about a negative social experience and the second about a positive one.

A group of our friends invited Kim and I to go out with them in the downtown district – dinner followed by drinks at nearby establishments (note that my drinks these days are often of the Diet Coke variety). The dinner would be at a restaurant everyone knew to be accessible for me.

The meal was wonderful, but then things became progressively awkward. The organizer of this group is used to socializing in a fluid manner. When downtown, they may have dinner with a few people, and then mutually part ways and have drinks with other people. Maybe they’ll even meet up with the original group later. But on this night there were two couples in the group who we don’t see enough of, and Kim and I really wanted to stay with them for the evening. But the organizer kept pulling the group in a direction that was largely inaccessible for me. I felt that I had made my desires clear, but perhaps I hadn’t.

Eventually a subtle tension developed in the group regarding which type of establishment we would visit next, and this made me extremely uncomfortable. I felt the sudden urge to extract myself from the situation, so I announced to Kim, a little earlier than I otherwise would have, that I was tired and it was time for us to go home.

The above is an unfortunate example of poor communication at best and insensitivity at worst (but knowing the individuals involved I am certain there was no malice). If it seems like socializing with a wheelchair user is always “all about them”, I’m afraid that is largely the case. Believe me, I wish it wasn’t (there’s too much pressure).

photoNow, let’s consider at a different kind of story. Recently Kim and I were asked to spend a couple of days at a lake house in northern Maine, as I hinted in my previous post. I don’t travel lightly, but we packed up our minivan with all my disability equipment, and we headed north.

One evening, our hosts invited a dozen or so people over for an impromptu party. There were four stair steps between the main floor of the house and ground level, where there was a nice fire pit just a few feet from the water’s edge. After we all huddled in the house for a while to avoid a thunderstorm, the group reached consensus that it was time to build a campfire. I was completely sympathetic to that idea. This was the obvious, fun group activity available to us. Everyone was under the impression that my iBot wheelchair would afford me the ability to join them. Unfortunately, I no longer had enough battery charge to go down the steps, sit by the fire, and then climb back up the steps. I needed to stay in the house. That was unfortunate, because I love campfires. But even more importantly, the last thing I wanted to do was to ruin this group’s enjoyment by having them forego the campfire on my behalf. What to do?

I stayed quiet until a roaring fire had been built. Only then did I let a few folks know about my battery problem, and things just sort of took care of themselves. As if following some master schedule (but of course no such thing existed), everyone rotated through and visited with me in the house, a few at a time. It worked out wonderfully. This situation might have gone wrong in so many ways, not the least of which could have been my risking the stairs on low battery, and finding myself stranded halfway between the ground and the main floor! That would not have been good.

Wheelchair users are definitely high maintenance social companions. Nevertheless, I find that the vast majority of my group outings are highly successful and fulfilling, both for me and I believe for others. If you like, you can cut out my 10 tips above, laminate them, and carry them in your wallet. Or you can just remember this: spending time with wheelchair users requires that all parties exhibit a measure of candor, flexibility, and empathy. In the end, that’s really all you need to remember.
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Tuesday, July 16, 2013

I’m Taking a Week off from Blogging

You can find us sitting by a lake in Northern Maine, like the old days…

Wednesday, July 10, 2013


English: Close view of profile of a Kodiak bro...
(Photo credit: Wikipedia)
Wheelchairs are scary. How do I know this? The mothers tell me. They tell me by the way that they pull their children close when they see me coming.

Okay, maybe that’s a bit melodramatic. These mothers may be, after all, protecting me from their snotty nosed little brats. Or they may not be scared of my appearance, but simply want to ensure that their children’s toes don’t get run over. But no matter the reason, I’m never able to pass by their watchful eyes unnoticed.

For most of the day I don’t think about my wheelchair, much like you don’t think about your legs. I usually don’t feel conspicuous when I am out in public. I carry on as if I blend into the landscape like every other person. But I don’t. I am reminded of this when I pass by a mirror or when I look at a photograph of myself in a wheelchair (or I approach a mother with children).

It’s not only from an aesthetic point of view that I temporarily forget I’m in a wheelchair; it’s also from a functional point of view. As I zoom down the aisle in a grocery store, for example, I am not riding in my chair. It is more like I am one with my chair. In fact, I would argue that in situations like this, my method of mobility is superior to yours. I glide as smoothly as a skater on ice, while you plod along in your awkward and primitive bipedal fashion.

Now, back to the issue of appearances…

I expect that when people see me coming, unless they are my close acquaintances, they either consciously or subconsciously take note of something unusual. Given that my wheelchairs are rather large and elaborate power chairs, not sleek manual ones, I stand out even more. Depending on someone’s ease and comfort with people in wheelchairs, they may experience any of a number of emotions ranging from pity to compassion to discomfort to indifference. But no matter how they feel, they almost certainly see a metal and plastic contraption coming towards them. If we don’t interact with one another, then that’s largely all they see.

I like to think, however, that if we make eye contact or especially if we speak to one another, then my leviathan transportation device fades to the background, and the essential person who I am emerges in the foreground. This remains the case for as long as we interact. As they watch me pull away, I wonder how long it takes them to be reminded of my differentness.

In fact, when Kim and I walk the neighborhood together and I’m in my Invacare wheelchair, before we leave the house I have her remove my headrest. I like the headrest because it allows me to fully recline in the wheelchair when I am at home. But I also understand that it makes me look that much more disabled when it is attached. Moving about without the headrest renders me ever so slightly less scary and more approachable.

Of course, the iBot is a whole ‘nother thing. Typically I am in balance mode when I’m out in public. I’m asking for attention; I’m pretty much begging for it. You can’t help but notice me. In fact, it’s amusing to see how hard people try not to stare. But Kim confirms for me that they gawk shamelessly after I pass by. My attitude when I’m in the iBot is that, yes, it’s a big scary contraption, but it’s almost certainly the most interesting thing you’ll see that day. The mothers hold their children (or cubs) especially close when I pass by in balance mode, but who can blame them.

I’m not finding fault with healthy people. I’m the same way. If I see someone who appears unusual for any number of reasons, I can’t help but take note of them, and I can’t help but at least entertain my various biases about their particular appearance.

It’s an extra burden that handicapped people must carry. We don’t blend in, and we can’t hide in the crowd. That’s all the more reason we should try to smile as much as possible and interact in a positive manner with the people around us – it facilitates the lowering of these artificial barriers.
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Wednesday, July 3, 2013

The MS Goldilocks Zone

o-HABITABLE-ZONE-PLANETS-570 The Earth resides in a Goldilocks zone – the temperature is just right. If our orbit was any further from the sun then all water on the planet would be in the form of ice, and life probably couldn’t exist. If our orbit was any closer to the sun then any water would be in vapor form, and life probably couldn’t exist.

Most people with MS expend considerable effort to seek out and occupy their own, personal Goldilocks zone. If the ambient temperature is too low in our homes or on our streets, certain problems like spasticity crop up. If the temperature is too high, all sorts of bodily functions can go on the fritz. I’ll explain how this plays out for me.

Before MS I welcomed the dramatic change of seasons that we experience in Maine. I had passionate outdoor interests geared for every month of the year, such as snowmobiling in the winter and golfing in the summer. You can read about my snowmobiling here and golfing here.  Obviously, for reasons that have nothing to do with temperature, I can’t enjoy these outdoor activities anymore. Not only that, but it’s difficult for me to even go outside at all in the winter. When my body temperature drops, my spasticity increases. The net effect is that instead of my feet staying nicely in the foot pedals of my wheelchair, my legs stick out semi-straight. I do go out in the winter, but only on the warmer days or when I am getting in the van to go to another climate controlled venue.

But the bigger issue for me, and for most people with MS, is my heat sensitivity. When we should be celebrating the arrival of spring, with its warm breezes, blossoming flowers, and green grass, we are instead fearful of temperatures rising above the mid-70s. We reluctantly huddle in our houses with the shades pulled or the air-conditioning cranked. I wrote about last summer’s distress here.

Each person’s reaction to high ambient temperatures is different. For me, I suffer from a general sluggishness. I get weak and tired and probably a little grumpy. I can endure the heat for short periods of time, but if I overdo things I am fairly useless for several hours.

English: Leaving traces on soft sand dunes in ...
(Photo credit: Wikipedia)
In the United States there are a wide variety of climates. Shouldn’t people with MS consider seeking out and then moving to that ideal climate – one where it never gets too hot in the summer or too cold in the winter? Theoretically, yes. However, the only place I’m aware of with comfortable temperatures year-round is the coast of California, but who can afford to move there? I live in coastal Maine, and I couldn’t imagine relocating anywhere south of here on the East Coast. I can barely deal with the summer temperatures that we have.

For years I suffered throughout the summer. The only air conditioner we had was a window unit in our bedroom. On the hottest, most humid days, I would retreat there with my computer and my television. This year, I could bear the indignity no longer. We parted with more money than we can afford in order to purchase a ductless central air-conditioning system. Our house is configured such that one of these units can do the job for both my living area and my bedroom. Each day this summer I have looked at the outside temperature and the inside temperature, and decided if it is an air-conditioning day. I don’t hesitate for a second to pull the trigger on my A/C’s remote control.

I asked for and received a letter from my doctor indicating that the purchase of this air conditioner was a medical necessity. That means the cost of the unit will qualify as a tax-deductible medical expense. Don’t get too excited, though. The rules for deducting medical expenses don’t always result in actual tax savings. A complete explanation of this tax code cluster-fuck will have to be the subject of a future blog post.

I resent the fact that I am as confined to the inside of my home during these mid-summer days as I am during the harsh winter months, but at least this year I’ll remain comfortable and relatively energetic for the duration of my house arrest.

I have created my own, personal Goldilocks zone.

Here are some links to peruse for more information about MS and heat sensitivity:
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