How to Be on the Ground Floor of Taking a Stand (Even When it Sucks)

I winced – even though I saw the question coming.

I recently got a text from a colleague in New York asking if we could have a phone call because she had a quick question about our upcoming work retreat for our organization. I knew that she’d been searching for a place to have the retreat, so I had a hunch what she was wanting to discuss.

A few minutes later when we talked, my hunch was confirmed.

An affordable and beautiful retreat center had been found. But there was one hitch: it wasn’t handicapped accessible.

She told me that there were two flights of stairs and no elevator.

I can walk but steps are challenging as I don’t have thigh bones or knees.

Of course, she was calling to see if I was able and willing to navigate the stairs. I have a condition in which I was born without femors (thigh bones) and knees. Though I can walk, it’s often easier for me to use a wheelchair.

I took a deep breath, not because I was controlling anger. Really, I was stalling.

I had no idea what to say. I was so torn that when I started to answer her, I wasn’t sure what was going to come out of my mouth.

“That’s a really hard question,” I began and followed it with a long “hmmmmmm.”

I thought about the great non-profit I work for and my love for the work we do.

I thought about how it’s helping marginalized people build power and how we don’t have a lot of money to do it.

I thought about the cost of retreat centers and how pricey they are.

And then I thought about how I can do a few flights of stairs now and then.

I was conflicted – acting on principle and acting on what’s most practical.

I almost asked her if I could think about it and call her back. But then I decided to just make a decision right then and there.

“Here’s the deal. I can do a few flights of stairs. And if this really is our best option, I’m willing to do the stairs if someone carries my bags and my wheelchair up them. However, to be honest, I really hate inaccessible places. They are really unwelcoming and I try not to go to them.”

My coworker totally understood and apologized again for even asking me. I really don’t think she did anything wrong, but the situation sucked.

Ten or fifteen years ago I did a lot more stairs. Not only was my body that of a spry younger woman, but in retrospect, I know that I was trying to prove something to myself and the world around me.

“Stairs to the top of St. Peter’s Basilica? Bring it!” or “A half-hour climb to the top of this amazing Mayan ruin? Well, I gotta see it so I guess I’m in.” Or in a more mundane circumstance, “Two flights down to the subway? Grab my chair- let’s go.”

It’s not only that with age I’m less physically energetic (like anyone!), but I’m also not trying to prove as much about what I am physically capable of doing.

These days I’m working on proving something else: we can make this world more accessible.

If I’m always accommodating unaccommodating places then I’m not helping with that. Venues of all sorts have to learn that they are less desirable when they are inaccessible and that they will lose business unless they comply with the  Americans with Disabilities Act (ADA) – even if they legally don’t have to for some reason.

There’s a difference between a work retreat and a world wonder. If I had the chance to experience an amazing piece of history or art and it required a lot of physical exertion, I’d still do it. Ancient masterpieces really do get a pass in my mind – they are definitely grandfathered in the ADA from my perspective.

(If you’re wondering how hardcore I can be, you should know that I did Pompeii in my wheelchair. But I digress…)

The Dilemma of Being Nice and Understanding 

When I hung up the phone that day, I felt sad.

I was still torn about what the right thing to do was. And there was a little haunting voice telling me I was a loser for making such a big deal out of it.

“Just be flexible” that little nagging voice said. “Just suck it up and do what’s good for the rest of the group. This retreat center is way more affordable than others – you wouldn’t want to be the reason your organization has to spend more money, would you?  You can get out of your chair, so do it and quit being such a baby about the whole thing.”

Whenever I get this little voice, I never know how much to trust it. Usually, I simmer on it and ask a friend what they think.

Later that evening, the friend I confided in was my life partner, Ryan.

I began the discussion tentatively, because even though my friends are very understanding and compassionate, sometimes when someone doesn’t have a disability they don’t get it and that hurts even worse.

However, I know I’m full of it sometimes and I have found that bouncing something off a trusted friend is a good way to find out if I am.

Ryan’s exceptionally good at these things actually, and has lots of wisdom and experience around disability. Still, I started off cautiously.

“Honey, I want to ask you about something. I’m not really sure you’ll understand, but hear me out.”

(In retrospect, I probably scared the crap out of him with my introduction!) From there, I filled him in on the call from my colleague in New York. He interrupted me almost immediately.

“That’s messed up! You can’t have your retreat there! You guys can’t give them your money when they are inaccessible!” he howled.

A huge part of me was relieved to hear this reaction. We talked for a while more and it felt really good to have an honest conversation about all the feelings wrapped up in the situation.

Still, by the end, I was torn. That little voice telling me not to make trouble was still whispering in my ear.

The next day, I talked to a good friend of mine who does Mama Advocacy. She had the same reaction as Ryan – in fact, she was even more adamant. Because she’s gone through similar situations as a mom (breastfeeding in public, taking her babies to work meetings and things like that) she is acutely aware of how big of a difference accommodations make. She had some really good advice.

My friend reminded me that I’m not requiring accessibility just for me, but for everyone who comes after me!

Handicap stairsThere are plenty of people who can’t get out of their wheelchairs and to sit in solidarity with them is more important than being easy to work with.

Framing this as a way to be an advocate for the disability community zapped my inhibition about being an advocate solely for me.

She also pointed out that my organization fights for justice and that this is an opportunity to exhibit that commitment in a different way. She went further to suggest that we use this situation as a way to reach out to funders, letting them know that we had to spend more on our staff retreat because accessible places are more expensive and because of our values we decided to spend more.

I’m no longer torn on what’s the right thing to do. I’m sure that I will face this kind of situation many more times in my life.

While every situation will be unique and I will have to weigh the various components this time I think I’m going to call my colleague back and let her know I’ve changed my mind.



Photo credit: steps and symbol by hyku


About Dessa

Originally a Southerner, Dessa loves the charm and hospitality of Detroit. Dessa is a proud Little Person, using her disability to challenge, endear, and cut lines at amusement parks. Training community organizers by day and earning her Masters of Social Justice after hours, Dessa loves shifting paradigms, breaking glass ceilings, and honoring the Feminine Divine. Click here to read more about Dessa

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