Upon Loss of Privilege

This post is about losing privilege.

Let me be very clear: The people for whom privilege is a default setting, for whom privilege means an ongoing exercise of listening and empathy – those people are not losing rights en masse.

For GLBTQ folks to want to be legally married, it does absolutely nothing to straight folks’ marriages or the laws surrounding those.  For people to want to pee in a public restroom that matches their gender expression impinges upon the rights of absolutely no one.

This list goes on and on. I’m just naming a few really blatant examples that should be “duh” moments for most people.  Who cares about other peoples’ marriages or what’s going on inside bathroom stalls?

What I’m talking about is actual loss of one form of privilege. For just one person – Me.

On January 8th of this year, I wrote a post unpacking my privilege – going through as many items on the list of American forms of privilege that I could find.

I wrote the following statement in that post: “I’m white, adult, cis-gendered, and able-bodied. I’m a natural born US citizen…”

“Able-bodied.”

How easily I could type that word on January 8th.  How I could summarize myself and my mind-blowing lack of understanding of the world so completely in a single sentence.

That post was published about 2 weeks before the psoriatic arthritis flare began. About a month before my diagnosis.  Five months ago, I was able-bodied. Now, I am disabled.  The full-body joint pain, inflammation, and debilitating fatigue don’t look like much on the outside, but they are enough to make me unable to do normal tasks.

Tonight, I went to the grocery store, and I looked for one of the motorized scooters in vain. There were none available, so I leaned on my cart, and I sucked it up. My husband took a separate list to the far half of the store, and we met in the middle. Even with only walking half of the supermarket, my back and hips hurt, my ankles ached and wobbled and I was out of energy.  I don’t look sick. I had to screw up all my courage and swallow all my pride to go look for the scooter. I didn’t want to try to ride it, but I knew it was needed.

I tried to drive last week, and it never occurred to me how much we drive with our hands, wrists and ankles. I hurt everywhere. Concentrating on the interstate through that pain sapped the rest of my energy.

I can’t drive. I can’t go grocery shopping. I can’t commute, and I need a ride through the airport. On bad days, I can’t get dressed. Often, I don’t feel up to showering.  I still have a hard time walking for more than a quarter of a mile, and can’t stand for more than five minutes or so without fatigue. When I have brain fog, I also cannot think clearly, concentrate, or communicate properly.

It’s only by grace of the nature of my work and the remote-work options available that I’m able to keep a normal job with this condition. If I had to commute, I’d be screwed. If I had to do something that was physical in any way, I’d be unemployed.

According to the Americans with Disabilities Act (ADA) a person must have what is considered to be a physical or mental impairment that substantially limits one or more of your major life activities.  Psoriatic arthritis is considered to be a qualifying physical impairment due to the pain, fatigue, and lifelong nature of the illness.

“Major life activities” include “functions such as caring for yourself, including bathing, dressing, shaving, preparing a meal, going to the restroom, performing manual tasks, eating, sleeping, standing, walking, lifting, reaching, bending, seeing, hearing, speaking, breathing, learning, reading, concentrating, thinking, communicating, interacting with others, and working.”

I am a disabled person.

I share the ADA list because I needed to look it up for myself when I came to this realization. I had to read the definition to be able to determine this for myself, using some sort of clear and objective measurement.

Riding through the airport in a wheelchair was awful enough. People acted like they didn’t see me, but they still side-eyed. They accidentally elbowed me in the head on the elevator and then stared when they they thought I wasn’t looking to figure out what’s wrong with you. The airport employees didn’t believe that the chair was for me.   It was this unsettling combination of feeling invisible and hyper-visible and on display.

Riding on the scooter in the grocery store would have been similar. I was relieved there were none available. I knew I needed it. But thank God, I had to do without out. How would I stop myself from explaining to every person there why I needed it? Trying to explain something invisible to them, that’s none of their business.

I have to own that I’m disabled.  It’s not just about swallowing pride. There’s this huge emotional arc going on that I’m really struggling to put words to.  One of my best friends from college reached out after reading a blog post, asking me why I hadn’t said something sooner to her.  Turns out, her dissertation was about disability.  When she read my post, she reached out.

“There’s so much shame in disability,” she typed.

Shame. Yes, this complex emotional arc is one of shame.

I feel ashamed that I need to use the scooters or wheelchairs. I know I need them, but I still feel ashamed that I do.  I feel ashamed that I can’t help my husband around the house. I feel ashamed that I can’t cook healthy meals every night. And on days when I feel particularly lousy, I feel ashamed to spend the whole day in bed, sweating through another set of pajamas.

I felt ashamed at a graduation last weekend sitting when they asked everyone to stand. The guy with the cane two rows over didn’t seem to be too bothered by it. I felt deeply ashamed.  I couldn’t even give a standing-O to Oprah, for crying out loud.

Luckily, I know the cure for shame. Shame cannot abide to be spoken. It cannot withstand empathy.

Note: I’m breaking this topic up into three separate posts to make them more digestible.  There’s a lot of ground to cover. I’ll be linking all of them to the collection page, even if I don’t  tie them together from post to post.