This week, we’ve invited our YOPD Council leaders (Amy, Steve, Gaynor, Kat, Tom, Erin, Heather, and Kevin) to take over the blog and share their stories. We hope you’re as inspired by them as we are.
Written by Heather Kennedy, Davis Phinney Foundation YOPD Council Leader
We’re going to talk about an up-and-coming neighborhood I call the Reasonable Boundaries District. Hardly anyone lives there yet, but we’re hoping to spark a bit of urban infill in this under-the-radar space. Because the weather is amazing there.
We all have a certain urge to show people we understand them. It doesn’t come from a bad place. It comes from a necessary, fundamentally human place. It does.
But there is a reason we don’t walk a mile in someone else’s shoes if we can help it. They aren’t our shoes. And when someone else has been walking in them for a long time, they develop a pattern of wear that’s unique to that person. So, my shoes would give you blisters, and your shoes would shred my toes even though we wear the same size because our feet are the point, not the shoes we walk in.
Let’s say you have a friend who has a disability, a chronic illness, a stitch. You want to help. You’re not sure how. You don’t want to get it wrong. I get that.
It’s not easy being around chronic illness, as the chronically ill know all too well. You want to know how to help. We all do. But how do you give the right help? How do you provide help while still respecting their boundaries?
The answer: you ask.
Be curious. Instead of being patronizing, be curious. Instead of scrutinizing, story-lining, mind-reading: be curious. Ask questions. Trust your disabled person to handle it if you get “too” curious. Ask them what they need instead of making assumptions and plans for them. “Hey, I’m at Trader Joe’s, do you want me to grab you some half-and-half?” is an awesome, helpful, yes-or-no question. Ask. Ask. Ask.
I have experienced the condescension of someone who thinks they understand everything I’m going through because their sister or their Uncle Earl or their elderly neighbor had Parkinson’s. I respect your previous relationship with someone living with Parkinson’s, but it’s important to remember that Parkinson’s leaves a unique thumbprint on everyone. It’s disheartening when people who have known a Parkie come away without this insight.
I’ve been ghosted by people I thought I could depend on. I’ve experienced the “help” of someone who has already decided my condition is somehow spiritual and that they, in their wisdom and insight and spiritual attainment, can “help” me in ways that are silly at best and deeply toxic at worst. Please don’t tell me what I need unless I have specifically asked you to do so. Ask me what I need. I didn’t get to be fifty years old by not having an answer to that question.
I’ve also asked for physical help after an operation and somehow that opened the door for people to offer all sorts of advice about my personal situation, my relationships, and my life in general. It’s as if by asking for one thing, people assume I’m asking for help on all the things. I’m not.
So, instead of wasting any more time misunderstanding each other, let’s take a comfy seat around the proverbial campfire. You can play fascinating guest, and I will have a few questions to start the conversations that matter. It’s going to be a good conversation, and a real one. (Just like the ones we have each month in our YOPD Council sessions.)
Learn more about Heather on her blog at kathleenkiddo.com.
WANT TO learn more about the yopd Council?
You can register for the entire YOPD Council series here. We meet on the third Thursday of every month to discuss the unique challenges of living with YOPD.