Privilege

“You do know you’re better off than most, right? RIGHT???”

The second, repeated question came because I didn’t answer the first one. I wasn’t sure exactly what he meant by this. It was my follow-up with my Mayo doctor (an MS specialist) and we had barely started our telemedicine visit when he made this query. He had asked how I was and I had answered as honestly as I could. Which included some lament about how I still couldn’t do everything I wanted to do.

And then the question: You do know you’re better off than most, right?

Now, I have seen several others who are better off than me. I personally know several others who are “better off” than me. They walk more confidently than I. With trekking poles. Or unassisted. They work. They hike. They run. Even though they, like me, have been diagnosed with a neurological condition they are still, in my eyes, “better off.”

And so I hesitated to answer. And he asked again. “RIGHT???”

The conversation continued without me responding. We talked about the coronavirus and whether I was at an increased risk to get it or to have a harder time with it (the answer to both of those, from studies that have been done, is no). We talked about the need to do follow-up MRIs and make an in-person visit when we could. We discussed a bit about just life and our concerns for what’s happening in the world. I reminded Dr. Kantarci about the MS Gym and told him I’d been chosen to take part in higher-level neuromuscular training and the improvements I’d seen from doing that program. He was thrilled to hear about that. He said it was exactly what I needed to be doing – what all his patients needed to be doing, but that not all of them would. Because some of them were happy enough with how they were doing. Because they wouldn’t believe it could help. Because their doctors didn’t believe it would help. But largely because they simply couldn’t do it. They didn’t have time, or the ability, or the resources, or access…

Trevor Wicken is a miracle. He doesn’t have to lay his hands on you to see what needs to be worked on. To know which parts of your brain have been affected and need a workaround. All he needs is videos of you walking and doing specific exercises. He’s amazing. His programs are amazing. But he’s only one man. And the most valuable resources he offers aren’t available unless you’re a paying member.

Oh –

Some wouldn’t have access…

Some wouldn’t have the resources…

My original intent in 2018 was to take a year off from work and focus on me. I did this, partly, because I understood that the stress of a 40+ hour work-week was getting to be too much for me. I didn’t have the energy to do it; and I didn’t have time/energy to exercise on top of it. Despite still being upright, I was falling behind in getting ahead of the damage. I worried a bit that if I didn’t put the time into getting better, the window on being able to workaround might close. I’m lucky that Robin had a great pension plan through NASA and we can exist comfortably on his continued take-home pay while neither of us works.

Oh –

Some wouldn’t have time…

Some wouldn’t have ability…

I started my vocational path as a young teenager by learning about systems analysis. I consider myself both an empathetic person and someone who has the ability to see the larger picture. But I needed it subtly pointed out to me that some people with MS are “settling” for the MS medicine because it’s the only hope they have of slowing down their disease so they can continue putting food on their table for as long as and as well as they can…and that some get whatever small benefit they can from “regular” physical therapists who don’t understand that different kinds of exercises might be more beneficial because it’s all they have access to – or all they can afford – or all their insurance and/or doctor will prescribe and cover.

I am better off –

All of these things have been floating through my head the last several weeks. And then there was George Floyd.

******

Do you remember when the new designs for US paper currency started coming out in the early aughts?? I do. It’s about the same time – probably exactly the same time – that those counterfeit detection pens started appearing at the registers of convenience and chain retail stores. I remember having my money checked; several times actually. There was even one time that the cashier was certain that one of the bills I handed her was fake. I remember leaning over the counter toward her while she checked. I was interested in knowing too. Not worried about it…just interested. Because – and here’s what we often forget – it wasn’t my bill. I didn’t own it. It was simply in my possession. I had gotten it from somewhere else; the bank or another store. And now I was passing it along to this business in exchange for whatever it was I was buying that day. No big deal; if it was fake, I’d probably be out 5, 10, or 20 dollars and I’d have an interesting story to tell. Nothing more than that. This is not what happened with George Floyd.

I am better off –

******

Two years ago I took part in a Crossroads Anti-Racism training event at Montreat Conference Center. One of the sessions that I attended was focused on things you (meaning me or any of us as individuals) can do to bring about changes to the systems that have oppressed people of color for generations. The opening activity for our time together was an exercise on privilege. There were six sheets laying on a table and jars of colorful paperclips. {Many of you have done an exercise like this so I know I’m not walking you through something you’re unaware of}. You took a paperclip for each experience on those sheets you could safely say you’d be allowed to do (or you had already successfully done) without incident. The experiences addressed situations where age, gender, sexuality, race/ethnicity, religion/spirituality, or socioeconomic status might play a role in the outcome of the experience. I walked away with 47 paperclips in a necklace. 47. Not the most you could receive, but a significantly high percentage.

I am better off –

Since this is my blog site, it feels a little like this should be the end of the post – my confession of how I came to understand the level of my privilege by reflecting on a direct question from a medical provider. But it’s time for more than that. It’s far past the time for us to contemplate our shortsightedness in ways that lead only to us being and perhaps acting a bit more “woke.” We are in need of deep communal reflection (which entails many, many individuals reflecting in a group setting) on how those who hold a higher number of privileges than most have co-opted the systems so that they work conveniently and readily for “us.” And how those who have fewer privileges don’t have “interesting stories” to tell but instead experience and relay stories of frequent dismissal, harassment, belittling, abuse, oppression or worse. It’s time we own the privileges that are often permanently ours to own.

I don’t have the answers. The fact is, I (we) shouldn’t be the ones with the answers. However, simply by nature of the systems we currently have in place in this country, those of us who find ourselves in the “better off” category must play a crucial role in creating a more just system for those who are (God-waiting*) temporarily disadvantaged because of their status on any one of those previously-mentioned scales of privilege. By advocating for, listening to, making room for, and working with those whose voices have long been dismissed, unheeded or in many cases, silenced. Until the systems that oppress crumble…and those who have been held down can also proclaim “I am better off.”

We can do better. For the sake of our sisters and brothers, we must do better. Today I pledge more fully and more strongly than ever to do my part.

*I know full well that the saying is God-willing but I believe wholeheartedly that God is indeed willing and that the delay in this becoming a reality lies fully and squarely on our shoulders. Thus, God-waiting