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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  1. great stuff. tho it's sort of like preaching to the choir - how many non-WUs will read this? And we users of conventional, non-space-age wheelchairs find that most of our friend's homes are inaccessible, especially their bathrooms.. "oh, there's only a few steps," a few is usually too many.

  2. Stephen, couple of things… First, I like to think that many regular readers of my blog are people who know disabled people, but are healthy people themselves. Second, Google! If I can get a list like this out on the Internet and people start searching for how to socialize with a wheelchair user, then bingo! Someone reads my post and somewhere in the world a disabled person is better off. Call me a dreamer :-)

    Yes, doesn't it drive you crazy when people consider a certain venue accessible, and then you come up upon "just one or two steps"!

  3. I, too, have wonderful, caring friends, and they do everything they can to accommodate me. It just gets frustrating at times, though, that I have to do so much pre-planning.