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CAPOS is a unique syndrome with five equally complex symptoms: CLICK HERE to find out more


Advice – daily prompt

What’s the best advice you’d give to someone younger than you?

An interesting topic:

My son CAPOS, same as me, but his symptoms are milder than mine.

I’ve told him, in terms of ataxia, he can do things that I couldn’t do when I was his age. And that he should not be using ataxia as an excuse to avoid activities.

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To other non-disabled youth I have a plethora of advice I’d give, which depend fully on their disposition:

  • To the airheads who stand and stare unblinkingly at me while I attempt to maneuver past them using my power chair, I’d advise them to: “Move!”
  • To young people who go everywhere, it seems, with a device two inches from their face, including those who are crossing extremely busy streets, I’d advise to: “Put your phone away!” “Watch where you are going!” or simply “For fucks sake!”
  • To young people who support or work with individuals who are disabled, I met two of them last week, I would give “Thanks” and advise them to “Keep up the good work.” As I did last week, the DeafBlind person had two PSW (personal support workers) whom I’ve never met before. I took the time to chat with the DeafBlind person, then thanked the PSWs who might not get many thanks, especially from the DeafBlind person. Sometimes even a stranger can boost morale.

Thank you for reading!

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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.