They Call me Shuffles

27 December 2020



A diagnosis with Parkinson’s changes a lot of things: Motor function, non-motor functions, but maybe even more powerful is the changes in social interactions.

I personally don’t mind being called “Shuffles” now, I did at first (8 or so years ago I think), I was angry with the first person that said it, but looking back it was probably more me coming to terms with my changing condition than actually feeling angry with anyone.

I have had nicknames all my life, and always as a term of endearment (I hope ). Some people (not many) have commented to me that this new one, which has sort of stuck, isn’t appropriate, and think it is disrespectful.

It’s not a name I would want my family or professional colleagues to call me, but socially I’m ok with it and I now turn my head when a friend yells out my nickname.

My reaction generally is that If they felt uncomfortable in my presence, they wouldn’t say it, so they feel comfortable with it. For me, I would prefer to have an endearing nickname rather than being referenced to as the bloke that walks funny.

However I am equally am NOT ok with labels for those that find it offensive for themselves, and I will respect that too, no questions asked !

There is loads of discussions on “ableist language” and what is the correct or incorrect language to use in reference to those with a disability, or just in general conversation as a norm. Some of the language is indeed derogatory and said with malice, or at a minimum, lack of concern.

The term “Parky” however I suspect I only hear from those that have the condition, or those that have been invited into the realm by association, so I don’t feel it comes from it being used in a derogatory sense, and usually has context around it.

From an outsiders point of view I guess also, seeing a group of physically challenged people refer to themselves with something colloquial I feel also helps breaks barriers between the “withs” and “withnots” with a degree of humour, and makes social interactions and introductions a little less awkward for those who are uninitiated with being around those affected by PD.

At the end of the day, though, I don’t feel measured and won’t be measured by a name that someone calls me. If they are using it as a measurement or a slur, I will simply choose different company to be seen and associate with.

I will allow myself only to be measured on my accomplishments, irrespective of my  PD, and the legacy I leave behind for others to learn and enjoy.



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