climbing down the well

Last Thursday, May 1, was Blogging Against Disablism Day. I didn’t have the time or energy to read any of the amazing posts until today, but I’ve spent the past several hours (hurray for insomnia!) riveted by all the brilliance and beauty. I’ve never written a post for BADD myself. In fact, until this moment, only one person in the world has ever read this blog.

But then tonight, I was reading the 30th or so post from the list, The Weary World’s “I went to your city and didn’t feel anything: Why I’m leaving Portland.” She talks about moving to Portland and finding community, and about how that community disappeared from her life when she and her husband became disabled. She writes, “we can count on both hands, in the times we’ve been housebound for his condition, mine or both (which spans a goodly chunk of the past two years), the times friends have visited us.” Then she lists off “To be an ally to a disabled person, and avoid perpetuating a culture that makes them feel like isolated shit (in addition to their disability), these are things YOU need to do.” And I’m reading along and going, “Yeah, you tell it! Right on!” and mentally cheering her on.

And then I read the sentence “Coming over for a quiet evening in needn’t be viewed as such a pedestrian thing, such an act of charity— in most cities, it’s what people over age 27 do socially” and I started to cry.

I was thinking about someone I went to high school with and then reconnected with recently in a white anti-racist group. She said she wanted to hang out and I exchanged contact info with her but she lives in another town so I figured getting together would never actually happen. Then one day she wrote me an email that said “I’m inviting myself to your house, let me know if that works for you!” She came over and we sat on the couch and drank tea and ate vegetarian shepherd’s pie. And it was all so normal – like she actually wanted to be there, like it was worth a long trip just to come over and drink tea and talk. I didn’t have to guiltily sneak in a suggestion that “maybe I’ll be too tired to go out, let’s play it by ear.” I didn’t have to “earn” a visit by visiting her first.

Reading this post I suddenly realized that, with the exception of my friends who also have CFS, she is the only person who has come to my house in the last two years (not counting some game nights and parties) where it hasn’t felt like an act of charity or a hard-won trade that I “earned” by going to their house first. The only person who said, “I’d like to come hang out with you at your house,” rather than settling for that option in the event that I’m “too tired to go out” or simply ceasing to making plans with me anymore because I “always want people to come to me.” The idea that I could have a friendship where I don’t have to feel constantly guilty and apologetic for being tired and limited is unfathomable to me.

And I didn’t realize until I read this post and of course got all riled up at that rotten Portland community for abandoning the author and her husband that this might be something I could actually expect to have. I’ve given up almost all my friends and certainly all of my acquaintances and looser social connections, and it has been hard and lonely and boring, but I thought I deserved it because I can no longer “be a good friend.” And people who aren’t good friends don’t get to have friends.

I work hard to be an ally and stand in solidarity and examine my privilege. It’s one of the few things I still spend energy on, because it’s important to me, maybe the most important thing. But I had no idea until those tears started to come how deeply and completely I’ve internalized my ableism.

I have worked hard to be an ally to myself, too, to try to see my value and worth as being separate from how I contribute and conform to our standard culture and expectations. And this process has been deeply spiritual and personal, with much healing and growth as well as plenty of hard, dark spaces.

But maybe the process has been a little too personal. Because while I struggle daily to stay grounded in my own worth, it makes complete sense to me that, to other people, I’m worthless. My mom is sick and I can’t take care of her. My friends with kids don’t leave their neighborhoods and I’m certainly not popping over with casseroles to see them through the first few months of a new baby. My friends without kids like to go out dancing, to museums, to dinner, and I don’t have the money or the energy to join them. Organizations I’d like to volunteer for or become involved with would never want someone like me – I’d just get perceived as flakey and unreliable and probably burn any bridges I attempt to make with them. New people ask, “What do you do? What do you like to do?” and I don’t have an answer because my choices are either a) say something that reveals more intimate details of my life than I want to with someone I’ve just met or b) sound like the most boring/lazy/zero of a person with no answer at all. Sometimes I lie, and boy does that help my self-esteem! My partner has left from the sheer misery of being stuck between feeling compelled (by himself) to take care of me and prioritize my illness above all else and feeling frustrated that I don’t have the energy to match him or to live with him the life he wants to live.

So yeah, it makes a lot of sense to me why no one comes around. Wouldn’t people want to spend their precious time and energy on friendships with worthwhile people? Not someone who is always sick and overwhelmed (not to mention someone with the annoying habit of calling out racism, sexism, and transphobia over dinner).

Until I read this post, and thought about my friend who came over for tea, it had never occurred to me that there might be people out there who could to be an ally to me, to go out of their way to enjoy my company because I still have something to offer despite the fact that it’s hard for me to get around. That there might be something other than the standard quid pro quo system that I simply don’t have the currency (i.e., energy) to participate in.

Thinking about this, I feel sad. I see this internalized sense of worthlessness and it goes deep, deep, deep. And thinking about this, I feel hopeful. If there was that one friend, on that one day, with the tea and the hanging out on the sofa, maybe there will be another day, another friend. Maybe there’s a whole slice of the world out there that I can’t fathom but is there nonetheless, a place where all the beauty and power and awesomeness I see in myself will someday be reflected back to me by others, and ideas of worth and value will become meaningless as we curl up on the couch to eat our shepherd’s pie.