Let Us Stand (Literally)

22 Aug

Earlier this week, an attendee at one of my speeches approached me after my program and told me she, too, has arthritis and degenerative disc disease. Our conversation moved on to how painful it is to sit.

You may not realize how much of a sit-centric world we live in until you lose your ability to sit down without significant pain.

Think about all the world’s chairs and seats in our daily lives. Office jobs, classrooms, cars and trains. I love to travel, but airplane seats are hell on my back. Last time I flew to Asia, my foot swelled up so much I couldn’t get my shoe on. I had to navigate the airport and then trains from New York to Pennsylvania without having my right shoe all the way on. Just try to imagine that. Then add pain.

Work, school, getting there and back, these are the necessities of life. Plus getting medical help. Waiting rooms. Currently, I’m having a terrible time with my disc disease and osteoarthritis in my spine. I think I’ve got a disc out and a pinched nerve. I’m not totally certain because I haven’t been to a doctor. I haven’t gone to a doctor because I can’t bear the thought of a waiting room. Sitting just makes it worse, and I get so tired standing.

Add the optional things in life. Going to a movie, the symphony, or a hockey game. Grabbing dinner with friends. Simply sitting with someone on a porch. Attending worship.

National Theatre of São Carlos

The National Theatre of São Carlos, the opera house in Lisbon, Portugal, where I enjoyed Rossini’s La Cenerentola (Cinderella) despite horrific back pain from sitting.

I, like many of us with not just hidden disabilities, but any disabilities, will often pretend I’m uninterested in something or come up with an excuse to not attend an event because I anticipate a difficulty, whether it’s pain with sitting, fatigue, or sensitivity to loud noises. The truth is I totally want to go, but I worry I may turn into terrible company or ruin the night by having to leave early. If I do go, I’ll typically just go alone.

I’m a town council member and serve on our municipal authority and I get self-conscious at meetings when I keep having to stand up and lean against the wall behind my seat. I’m one of the youngest people there, and here I am exhibiting my disability in front of other public officials and the “audience.” A big reason why I’m self-conscious is that there are a couple people there who have teased me before and made me feel like my pain isn’t “real.”

What can be done about this?

First, it would be great if this were a less sit-centric world. That means universal design. Universal design is defined as:

making spaces, objects, and experiences accessible to all people regardless of disability or other difference

Think about how all new buildings are required to be wheelchair accessible, per the Americans with Disabilities Act. This is universal design. But there are plenty of other disabilities besides mobility impairments. We’re making progress. My physician has signs posted at entrances declaring it a “scent-free” zone, mindful of people with sensitivities and allergies to perfumes. That’s also universal design. Before I became self-employed, I worked for a company that had standing desks for employees who wanted them. It was wonderful.

Giving me a place to stand up is universal design. (Oh how I wish that were more welcome on airplanes.)

Second, be careful not to “sit pressure.” I haven’t even mentioned this yet, but it was a big part of my chat with that person the other day. When we choose to stand in a situation where most people are sitting, we are often pressured to sit down. Especially as women, because it’s still considered polite for a man to offer his seat to a woman if there are no seats available. I’ve been out with friends, standing at the bar (which is great because I’m the same height whether standing or sitting on a stool!) and they’ll get insistent that I sit, they’ll want to give up their own seats, they’ll make a production of finding an extra stool somewhere to bring over, etc. I usually downplay somehow and say something like, “Oh, I’m good, I’ve been sitting all day,” instead of saying, “Sitting is very painful, so I’d rather not.”

Which brings me to what I need to do, and anyone else who’s in my situation.

My job is to keep talking about it, to keep standing up regardless of stigma, teasing, and pressure. Awareness validates the importance of universal design and promotes progress. Me talking about it helps to make it normal to talk about it. It helps to reduce the stigma and pave the way for others to be able to stand, whether literally or figuratively.

More good stuff on this topic:

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