Writings about Ataxia, being DeafBlind, family life. The best life can offer!


Mobility device and DeafBlind? Yes, they exist… part 1

Hi there readers!

I’ve been working on this blog for a long time! Geez! Let me get it done!

It started as a general blog about practical etiquette for Walkers about Rollers; for able-bodied persons about those who need to use mobility devices.

However, I am pretty sure there are countless articles, blogs, dissertations, YouTube channels, etc, devoted to this theme; I haven’t researched, I don’t know.

So, instead of redundancy, I’ve decided to talk about my issues, personalized, yet general enough to knock some sense into readers.

After all, I am unique; I am a tiny dot on the Rare Disorder spectrum; I am CAPOS.

Over the next few days, you’ll read some specific tips that may be helpful to you, if you happen to bump into me on the sidewalks of Metro Vancouver; a rarity in itself. But, hey cheer up, even the planets align once in a while!

First and foremost:

  • Do not stare if you happen to see me arrive, park and then stand up and walk to, say, the Starbucks counter to order a grande Flat White.
  • I can walk, slowly at best, stumbling here and there at worst. Short distances are best.
  • Yes, thousands of other wheelchair users are unable to, for whatever reason, ambulate.
  • If this theme was a goldmine, I’m about to hit the motherlode:
  • Do not assume I can hear you. Yes, that is very straightforward right?
  • But why is that so important?
  • Because, society as a whole, Walkers, cannot seem to grasp that a Rollers can be Deaf, or even DeafBlind.
  • While 97.21%* of Rollers are hearing, there are obviously some that cannot.
  • * this follows the same reasoning that Rollers can ambulate, while others cannot.
  • Returning to the specific-ness of this blog: I’ve lost count of incidences were I’ve been “talked” to without my knowledge. The incident on the Bus in Surrey is a poignantly obvious example.
  • So, the tip here, if I don’t acknowledge your verbal questions, your profanity, your polite gossip; rest assured, I am not ignoring you. I just can’t hear you!
  • So, instead of repeating and repeating the same thing; if it is protocol (like in Surrey above), then approach me, tap my shoulder, get my attention, proceed to asking if the device is off. Carry on. We will all be happier!
  • If you are just being chatty, and strike up a conversation about the smell of the elevator we happen to be riding together, but I didn’t reply, don’t repeat yourself or turn away. Instead; wave your hand in front of your nose, grimace, thumb down. I’ll cotton on, I’ll probably be holding my breath as well. As we get off the elevator, give a thumbs up, or peace out gesture, I’ll do the same!

Thank listening today!

You’ll get a new blog shortly!

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About the author

Craig MacLean is DeafBlind with ataxia, a rare condition called CAPOS. He & his wife of 22 years have two sons, the oldest of which has CAPOS as well.

Craig uses American Sign Language to communicate. He is an avid writer, friend, Hot Wheel collector and intervenor advocate.

Craig sits on many committees, boards and associations as a DeafBlind rep. He graduated university with a BA in psychology in 2000.