Welcome to Jen’s primer on how to speak wheelchair.

What are some things people say that really get under your skin?

Jen: “You’re So Strong!”

Something I hear a lot that I never really quite understood.  How do you know I’m strong? How do you know what I’ve been through to overcome this challenge? A person’s strength is only tested when an obstacle or antagonist is difficult to best, when that person needs to reach deep into the murky depths of her fortitude. Yes. MS is indeed a very raw deal. But, I’ve had more difficult and painful experiences that were actually harder to come back from.

You don’t really know how strong I am. You see me in a wheelchair and think, Wow, sucks to be her. I don’t get why she’s so happy, she must have some really good zen mojo. You assume that I had to work really hard to become a positive person. My physical limitations, while challenging and irksome, aren’t my Everest. So, stop projectively identifying your own fears and insecurities onto me; my reality is not defined by your assumptions.

What could someone say instead?

Jen: “It’s really cool that you can drive with your mouth. Was it hard to learn?” Don’t focus on a negative. Instead, zero in on something that I can do. Having a disability isn’t always about overcoming it. In fact, it’s almost never about that. It’s my reality, and life (and I) are multidimensional. So, next time you see a person with a disability enjoying , don’t assume.

Elyse:

Any other things people say that you wish they wouldn’t?

Elyse:

Jen: “I’m sorry.” ‘I’m sorry’ is a sympathetic commiseration when tragedy strikes. “ I’m sorry that your husband left you and your 10 kids and took all of your life savings. That is so traumatic and devastating. I’m really sorry you’re going through that.” You say it when someone dies; you say it when somebody gets fired; you say it when somebody ran over your cat. Do I look like my diagnosis is so damn tragic that you need to give it the same level of pseudo empathy that you would give to someone who is experiencing something devastating? And, when the ‘I’m sorry’ comes complete with sad face and conciliatory (read: slightly smug) voice that you believe projects a level of compassion for us “less fortunate folk“? It’s pretty damned insulting. I don’t need your sorry. You hang on to that. I’m pretty damn proud of who I am and what I’ve been able to accomplish being, for all intents and purposes, paralyzed.

Elyse:

What is one thing you wish people would stop doing?

Jen: There’s actually something I wish people would start doing. I don’t know how many times I’ll be speaking with somebody and they start to share with me something difficult they’re going through to stop themselves midstream. They apologize for complaining. “I know it’s nothing compared to what you go through.” Again I’ll ask, how do you know?

I don’t take offense when you tell me your problems. I’m not internally rolling my eyes at your so called problem (insert air quotes here)  I can promise you I am not thinking, You wanna know what a problem is, buddy? Last night I could only watch as a giant rat gnawed its way through my bedroom door and started to eat my leg. Now I have fleas and I can’t even itch myself!

Everybody’s crap is their own. My life isn’t so horribly dire that I have to force myself to get out of bed every day. I don’t have those kind of demons. So talk to me about what’s difficult for you. It’s comforting to know that other people have trials and tribulations. Allow me the chance to earn a little grace by showing you comfort.

Elyse:

You know, what’s difficult and challenging for you is difficult and challenging for you. Nothing I’m going through diminishes that. Don’t be afraid to ask me if I need help. You know, chances are good that I’m gonna I’m not gonna be offended by that. Ask me about my situation.

I have no qualms talking to you about it, um, about MS, about why I’m in a chair. Now this might not be true for all people in wheelchairs, but a good number of us have gotten past our issues and do not mind talking about them at all. Talk to me about your mothers, sisters, uncles, best friends, neighbors, dealers, multiple sclerosis. Everybody knows somebody who’s got it and you know who knows. Maybe you know something that I don’t.

Maybe I have some insight that you can benefit from or they can benefit from.

 Does that really work? Do you ask. Well, no. Not all the time. Uh, if it did, I does that work?

Do you ask. Does that work? You ask. Well, no. Not all the time.

You know what I do when it doesn’t work? I fake it. Pretending to be happy even to myself is a lot closer to joy than wallowing in impotent anger. Does MS suck? Of course it sucks.

Do I wish I didn’t have it? Well, you know, what do you think? But it’s not going away. You know, years ago, I I was seeing a therapist in when I lived in Southern California, and she just happened to, uh, be a practicing Buddhist. And I was talking to her about just this very thing.

How do I how do I find my happy when life sucks and it’s only gonna get suckier? Well, she took me a a long time to get it. And I don’t know that I entirely get it, but she gave me a koan, a Buddhist koan. It’s probably the most famous one. A koan is kinda like, you know, an instructional story.

Little story for you to meditate on, I guess. It’s the tiger and the strawberry, and many of you have probably even heard it. So the story goes this way. There’s a dude, and he’s just walking along, and he bumps into a tiger. So it’s like, oh, crap.

So he runs away, and the tire runs after him. So he comes to the edge of a cliff, and he grabs a vine or a root or a vine or something. And he starts swinging away from the tire tire, but he swings over the edge of the cliff. So here he is dangling over the cliff. There’s a tiger above him.

Below him is, like, certain death. There’s, I don’t know, more deathly crap, like, rot or some crap, and there’s a strawberry growing on the vine that he is swinging on.

Ask me for my help with something. You know, many people in wheelchairs already feel like they have little to give back. I often feel like the parasite off the land, always taking, never giving. You know, we we struggle to find relevancy and and it’s difficult. This is definitely one of my biggest struggles, trying to still be relevant, to still be necessary, to still be able to give give back.

So ask me for my help with something. Now you’re probably not gonna say, oh my god, Jen. Thank god I ran into you, and whip out the article you’ve been working on for Popular Mechanics. This needs editing right away, but, you know, there’s other ways that I can be useful. I am a font of barely necessary information.

I might just have an answer to that question that’s been bugging you. The Packers won the first 2 Super Bowls. The small intestine is 22 feet long. You’re welcome. You know, I can listen to your troubles if nothing else.

So there you have it. That’s my primer on how to speak wheelchair, at least to me. Now, obviously, everybody is going to be different, and, um, many people aren’t as open about their experience being in a wheelchair as I am. But then again, many people are. Becomes pretty obvious pretty quick if someone’s not open to sharing.

I will say, though, that many, if not most people who use assistive devices would rather answer a few questions if it will put to rest, um, unfounded preconceptions thus perpetuating the vacuum of ignorance. And I hope you enjoyed this week’s talk. I welcome your comments and your feedback, and, um, you know, I think you can find me on Apple Podcast now and, you know, hopefully, I am going to be generating a little bit of buzz soon. I will be releasing my next podcast a little bit sooner. I kinda got way late this week.

But, anyway, I thought I would end each segment of my show with a fun fact. Something to ponder. 43% of pilots have admitted to falling asleep on the job with 31% of those admitting to waking up and finding their co pilot asleep too. You’re welcome. Till next time.