Last week, NBC’s American Ninja Warrior obstacle-course competition featured Jimmy Choi.
Choi is 50 years old, and was diagnosed with Young Onset Parkinson’s 22 years ago. After several years of inactivity, Choi went all-in on exercise, and has built a national platform as an online influencer, activist and spokesperson for the Michael J. Fox Foundation.
He has competed on American Ninja Warrior five times, and at 50 got farther than he ever has.
I genuinely admire his ANW performance, and his demonstrations of strength, agility, and determination in his online videos. While I can’t do what he does, his story and those of others have helped me stay faithful to my own Parkinson’s plan.
Not everyone sees this stuff the way I do.
On their Facebook page, the Parkinson & Movement Disorder Alliance posted this quote from a person with Parkinson’s:
I see lots of so-called inspiring posts about people with #Parkinsons running a marathon or climbing a mountain. I wish those stories helped me, but they don’t. They don’t inspire me. There’s no way I could do what they do. I can’t trust myself to walk down the street without falling. I’ve tried many times. It’s hard to make peace with this, but I’m coming to see that we all have a different journey. And we’re all at a different place on the journey.
The quote has resonated — as of this writing, the post had 275 comments, representing a wide variety of viewpoints.
Some expressed frustration with “PD athletes.” Others were willing to use those stories to help them keep going with their own battles.
In 2012, Australian disability rights advocate Stella Young coined the term “inspiration porn” in an online article titled “We’re Not Here For Your Inspiration.“
I don’t know Scott Hamilton personally, but that guy is really starting to burn my crumpets.
You’ve heard of him, I’m sure. He’s the one who said “The only disability in life is a bad attitude.” You know, that quote that’s plastered all over pictures of disabled people doing completely normal things and shared far and wide on social media.
Hamilton is a figure skater who has had cancer more than once and has survived after lots of treatment. Good for him. Although how it qualifies him to make such a bold sweeping statement about disability, I can’t quite grasp.
Young defined inspiration porn as “…an image of a person with a disability, often a kid, doing something completely ordinary – like playing, or talking, or running, or drawing a picture, or hitting a tennis ball – carrying a caption like ‘your excuse is invalid’ or ‘before you quit, try.“
Wikipedia has since settled on a slightly broader definition: “The objectification of disabled people as inspirations to non-disabled people on the basis of their life circumstances.”
These images and videos can reinforce stereotypes of disabled people, and minimize the everyday struggles we experience. They can create unrealistic expectations, and have mental health ramifications when we can’t achieve what the guy on TV just did.
On the other hand, they can also genuinely inspire. Many of the PWP’s I hang out with have watched other Choi videos, sought out the American Ninja Warrior footage, and rooted hard for him as he tackled each obstacle.
Like the term “parkies,” different people can encounter the same message and come away with completely different reactions.
Perhaps Facebook commenter Jackie Rennison put it best on the Parkinson & Movement Disorder Alliance post:
Everyone’s journey is different. My husband’s doctor told him to do as much as you can for as long as you can.
For what it’s worth, I’m prepared to do as much as I can as long as I can. I’ll use the stories of “PD athletes” as inspiration, recognizing that not everyone sees them as I do.
Me! Me! Me! in the Media
In 2015, the lovely and talented PDXKnitterati ordered me some shoes for my birthday. These were not just any shoes — they were custom-designed Adidas running shoes featuring the Portland International Airport carpet.
At the time, the airport was about to replace its carpet with one of a different design. This being Portland, people were upset about it.
NBC News came to town to do a story on the controversy. Somehow Michele and I wound up in the story.
I’ve been trying to figure out a way to get back on national TV ever since.
Although that still hasn’t happened, I am pleased to report that I appear in the current issue of the Parkinson’s Resources of Oregon quarterly newsletter.
The subject of the article is PRO’s Peer-to-Peer Mentor program.
If you’re a PWP or care partner in Oregon or SW Washingon, this is a great program, and it’s growing. To ask for a mentor or learn how to volunteer as one, call Mike Mulligan at 800-426-6806.
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Bonus for Those Who Read to the Bottom
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This is dedicated to my friends Tim and Doug, who have recently spent some time on Route 66:
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In honor of PWP Ozzy Osbourne, who recently gave his final concert, here’s another way to hear “War Pigs.”
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For anyone wanting to see the NBC News story (featuring ME!) I referenced above, here it is.
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