I’ve Had a Stroke…Know Your Etiquette! Sarah Levis

We all know the basic rules of etiquette and how important they are:

  • Use your napkin
  • Don’t talk with your mouth full
  • Don’t interrupt people

When you’re working with people with disabilities, you should of course observe these rules of etiquette, but there’s “disability etiquette” that should be observed as well. Not all of it applies to people living with the effects of stroke. But members of care and treatment teams should know basic disability etiquette and always keep it in mind, for everyone’s comfort and safety.

Most professionals will be taught these things in their training, but it never hurts to be reminded. You may find yourself in the position where you have to explain these things to loved ones of the people that you treat. For many people with disabilities, it’s difficult to speak up about these things. We don’t want to “rock the boat” or risk insulting people who are well-meaning but not really aware that some ways that people treat us as people with disabilities don’t feel good.

Don’t Touch a Person With Disabilities Without Their Consent

It’s a good policy to ask anyone’s consent before you touch them. Even the most basic of first aid courses teach that you must ask consent before offering first aid.  It’s especially important when you’re assisting some with disabilities due to stroke, however, because said disabilities often make us feel very vulnerable to begin with.

I’ll give you an example. At a summer party I attended a few years back, I made the mistake of sitting in a low, sloped deck chair. These chairs are still a bit difficult for me to get out of, but I manage. When everyone got up to move into the house for dinner, I struggled a bit to get out of the chair and joked about it. Before I knew it, someone had moved behind me and was hauling me out of the chair by my armpits.

It ruined my evening. I didn’t tell the helper so at the time, but I did eventually, and I explained why:

  • I hadn’t asked for his help.
  • He hadn’t told me what he was going to do, why, and when it was going to happen. I was taken totally by surprise.
  • The whole situation made me feel like, as a person with a disability, I was out of control of what happened with my own body. It triggered some unpleasant memories of some more traumatic “out of control” experiences that I’d had since acquiring disabilities, like being restrained against my will.

Does this mean that you shouldn’t help people with disabilities? Absolutely not. If you sense that someone’s having difficulty and you feel like you can help in a manner that’s safe for both you and them (note:  I’m sure that the physiotherapists out there already know this but I’d feel irresponsible if I didn’t mention that hauling someone out of a chair from behind by their armpits isn’t safe for either person, so don’t EVER do this), by all means offer. If the person accepts, go for it. If it’s not obvious what you’re going to be doing to help, let them know. And be sure to listen to what the person is telling you that they need as you’re providing help, or else you might get snapped at like the poor gentleman who was trying to help me up off the street when I fell during a trip to Toronto:

“Let go of my arm and back off!”

He was twisting my arm as he tried to help me up, and hurting me. I’d asked twice for him to let go and he hadn’t. I’d needed to get his attention somehow.

It’s all about respect, really.

And common sense. If you wouldn’t want it done to you, chances are that people with disabilities don’t want it done to them, either. The trouble is that people with disabilities have often been in circumstances that people who haven’t got disabilities have not, and sometimes they just haven’t thought about how they’d feel if someone touched them suddenly without asking or explaining why. I realize this. I’m prepared to cut people some slack (and I do), because how many people have experienced losing the use of one half of their body or thought about all aspects of how that would feel? Why would they?

But I’ll only take that so far. My body isn’t free property because I’ve had a stroke, and you’ll hear about it if I feel that it’s being treated that way.

Point #1 leads into Point #2…

2. Don’t touch mobility aids without permission

Most people with disabilities consider their mobility aids a part of their body. My cane feels like an extension of my arm when I’m walking.  I don’t even notice it anymore. I do notice, however, when people play around with my cane without my permission. It feels like an invasion of my personal space.

This seems to be a difficult concept for people to understand in general. It may be one of those things that a person can’t understand unless he or she has been there, and people without disabilities may just have to accept, without totally understanding why, that:

  • It’s rude to lean against someone’s wheelchair, or to sit in it while he or she is not using it, without permission.
  • Crutches, canes, and walkers are not playthings
  • A person’s mobility aid should be treated as if it’s a part of his or her body. Gauge appropriate personal space from its boundaries.

I’ve talked before about how people who are recovering from a stroke are often feeling that they’ve lost control of their lives in the face of all the change that’s gone on in their bodies and circumstances. When treatment teams teach stroke survivors that people should ask permission to touch their mobility aids, they give them a way to take back a bit of control.


Sarah Levis
Owner/Operator of Running Steps – A Girl With The Cane Enterprise
Business Twitter: @GirlWithTheCane