Thinking About a More Sensitive Approach to Language

Mary Beth Skylis avatar

by Mary Beth Skylis |

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Hi, everyone!

If we don’t know each other already, I’m Mary Beth. I’ve been working as a columnist and a forums moderator for Parkinson’s News Today for a fair amount of time now. But I’m still learning.

I set out here to explore my dad’s journey with Parkinson’s disease in a literary format. I wanted to create a platform to talk about his challenges and victories in a safe and supportive way.

As a writer and content creator, I know how important language is. As 19th-century English author Edward Bulwer-Lytton noted, “The pen is mightier than the sword.”

Words have the power to poignantly depict emotions, events, and thoughts, and it’s a wonderful power to be able to use them. But it’s also possible to use them to cause harm. Twisting a phrase or misusing a word can create bias, sexism, or other consequences, intentionally or not. I want to find ways to start a conversation about supportive and sensitive language specifically related to Parkinson’s disease.

I recently learned that certain terms exist in a gray area, in that they might be acceptable to some, but not others. Some people might even find them hurtful.

For example, I often see the term “Parkie” used to describe Parkinson’s patients. My dad is a Parkinson’s patient, and he takes little offense to the way people who don’t have Parkinson’s describe his experience. But others may be more sensitive to these things.

A regular participant in the Parkinson’s News Forums recently corrected me by saying that “Parkie” can be interpreted as a very demeaning or hurtful term.

I’d perceived it to be playful and lighthearted. And I liked the idea of creating a noun to describe someone who struggles with Parkinson’s disease. But I didn’t think about the categorization of Parkinson’s patients as potentially demeaning or stigmatizing.

Yes, language is nuanced and can cause both positive and negative reactions. I’ve worked closely with amputees, veterans, and others who have overcome unimaginable circumstances. I’m no stranger to the idea that the way in which we communicate matters greatly. Using the wrong words can cause unnecessary harm, and I want to find ways to minimize it.

I’m curious to know how others navigate the nuances of language. Are there terms that are entirely unsuitable to use in the Parkinson’s world? Are some better than others? And what might we do to continue evolving toward more effective communication? I’d love to hear your thoughts in the comments below or at the Parkinson’s News Forums.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

David Nelson avatar

David Nelson

I certainly find "The Parkstir" demeaning.

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John Bossler avatar

John Bossler

Words depend a lot on context. In our Rock Steady Boxing group conversation about Parkinsons is obviously open and candid. Be sensitive about other setting where knowledge about the disease may be very limited.

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Leslie avatar

Leslie

I was told by my pain specialist when I reminded him that I had Parkinson’s, “You don’t look like you have Parkinson’s.” I kept my cool & replied that’s because my medicine is working, I’m in a wheelchai so you have t seen me transfer or take steps & my current symptoms are unseen.Hi then said that it’s just they (people with Parkinson’s) are moving all over & can’t be still. I wish i could have thought quick *& replied that maybe he needed to read more about PD

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Gail Smoot avatar

Gail Smoot

I always say I have Parkinson’s. I don’t like to add ‘Disease’ to it. Disease has a negative connotation to me. I don’t like ‘Parkie’ either. It trivializes it in my mind. I think the words we use and the pictures we use to describe Parkinson’s are very important to those not familiar with the condition and especially those newly diagnosed. No one knows what to expect when first diagnosed. It’s hard to tell people you have a disease. It’s frightening to Google Parkinson’s and see an ink drawing of an old man, hunched over looking feeble. I was diagnosed 12 years ago and I’ve lived a good life and I still don’t look like that hunched over little man.

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Kathleen L. Karafonda avatar

Kathleen L. Karafonda

I hated the term Parkie when I first heard it. I then wondered if it wasn't a nice shortcut for 'person with Parkinson's; but I still did not like it.
Thinking of a similar shortcut for multiple sclerosis...it is inconceivable to me that a flippant shortcut would do the trick. Luckily 'MS' seems to have been used for as long as I can remember.
Nevertheless, PWP is not satisfying and took me a while to embrace.

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Mary Beth Skylis avatar

Mary Beth Skylis

Thank you for your input, everybody. I'm glad that we're able to have open conversations about language in this way.

And yes, Leslie, I can relate to having an illness that isn't always visible to outsiders. Are most people sensitive to your experience?

Gail, I appreciate your comment. Yes, I feel similar with things that are labelled as "disorders." Why aren't we defining ourselves by our abilities instead of our limitations?

Kathleen - what is it about PWP that you find difficult to embrace? Is it just labelling illness?

Thank you, everyone!

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Mary Beth Skylis avatar

Mary Beth Skylis

David, I haven't heard Parkstir before, but I can imagine that I'd feel similarly.

John - do you find that it's easier to talk about Parkinson's in a setting like RSB?

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