Loving Our Own Bones

from Loving Our Own Bones: Disability Wisdom and the Spiritual Subversiveness of Knowing Ourselves Whole  by Julia Watts Belser

"I was born with cerebral palsy, and When I walked as a child, my heel used to strike ground in its own distinctive rhythm. My gait was subject to scrutiny and no small disapproval.

Everyone wanted to fix it. I was a very compliant child: I tried to “walk right.”. I stretched the stiff anchor of my heel cord. I practiced over and over the motion of heel before toe. But as I did my exercises night after night, I also remember this : I remember listening to the off-beat of my limp and loving the sound of my own step. The way my foot struck ground, the distinctive rhythm of my walk? They were my signature, something that was purely my own.

This was the first spiritual insight I trace to disability experience, this decision to cherish something about myself that other people didn’t value. Maybe you know this insight too. Maybe you know what it’s like to say yes to yourself, even in the face of disapproval or disdain. As a kid who couldn’t walk right, now as a woman who rolls through the world, as someone whose heart never learned to conform—I trace my own truest sense of self to the decision to embrace those quirky qualities of soul that some folks wished to eradicate, to do everything I could to make sure they survived." [p. 3]

I wonder if you have ever said “yes” to yourself like that. Have you ever loved some part of you that others were trying to change? Have you ever loved a part of yourself that other people looked at with scrutiny and disapproval? 

I love that tender image of young Julia enjoying the sound of her own steps. It seems like a kind of grace, how she felt that authentic love arising from her own deepest wisest self, when everyone around her was asking her to change. I can think of several times in my life when I have been wrestling with some part of myself that was different from other people, and what a relief when I learned to love it anyway. As I have grown older, I came to believe this is one of our major tasks, to gradually understand and love who we are.

As a little girl I got made fun of a lot for being the smallest person in my class. I remember tearful bedside conversations where my parents really encouraged me to love being short, to be proud of it, and I have.

Some things are harder to love. Julia Watts Belser says “Sometimes my disability is painful. Sometimes it frustrates me. But there are also parts of disability that fill my heart with joy. There are wonderful things about being disabled, little secret things that non-disabled people never know. If you want to know who I am, you’ve got to know my disability. It is a core part of who I am.”

Could we love those parts of ourselves that are painful? That are frustrating? Could we really love our whole self?

This month we’ve joined with Rev. Aileen’s congregation in Virginia to discuss the book “Loving Our Own bones: Disability wisdom and the spiritual subversiveness of knowing ourselves whole.” by Julia Watts Belser, who is a rabbi, and a professor of both Jewish studies and Disability studies at Georgetown University. When we were discussing this passage, one participant said “the world is always trying to fix you. You are always trying to explain you can’t be fixed.”

This seems really important to me … how can we be present with the person before us, just as they are, without needing them to be different, be fixed?

For example, I know a lot of folks who struggle with depression. And because I have struggled with depression myself, I know how frustrating it is when as soon as folks learn you are depressed, they jump right away to fix it- “have you tried this? have you tried that?” “Yes, and about 100 other things you’ve never even heard of.” I bet anyone who has a chronic illness or disability has experienced this. Yet I know I have also been on the other end of that conversation at some time – when a friend is struggling, we want to help! We live in a culture with so many medical miracles, surely we are all one doctor’s visit and a pill away from being pain free, right? But the message our good hearted suggestion gives is “come back when you are fixed” as if the actual hurting, unique human person we are is only the shadow of some better, more productive, more pain free person we might become. All of us deserve to be loved now, all of us deserve to be seen now. All life is holy, now.

In seminary prof Parker used to say “we are all broken” and I think by this she meant; it is normal to be broken, it is normal not to be perfect.

Rabbi Belser talks about the idea of the normal person our society is built around. I’d like to call him Norm. He is (to quote Erving Goffman) “a young, married, white, urban, northern, heterosexual Protestant father of college education, fully employed of good complexion, weight and height, and a recent record in sports”

I would add- someone who has never had their heart broken, doesn’t know what it is to be excluded, can sit at a desk for 8 hours without pain, remembers words, can read the tiniest print, understand conversations in a crowded room, easily makes transitions form one space to another, and never needs help. He definitely never struggles with depression or anxiety. He is, in short, a myth. But a myth we’ve built our culture around. A myth that impacts how we see ourselves, and how the world does or does not make space for us. We call this Ableism.

Belser writes: “What defines the good body, the proper mind? It’s capacity to produce. Ableism operates, in part, by turning our ability to work into an assessment of our worth. It sets up accomplishment as a litmus test for human value.” I’m sure you’ve felt this – that how fast we go, how much we do is how we are judged, how we judge ourselves. But why? I was watching a discouraging video about what happens to all the stuff we return to online shopping. There were just giant piles of unwanted things headed, in large part, for landfill. Why are we pushing ourselves to work so hard to make more things than we need, to be delivered faster than we can use them up? Why do we put this strain on our bodies and minds and our earth?

What if we started from a different orientation, noticing and following the pace our bodies set, our earth sets.

Perhaps, like me, you learned something about this when we were locked down for the pandemic. Do you remember those early days? How our hearts and minds were so overwhelmed that everything seemed to slow down? When the ministers gathered, we all noticed how tired we were, how we just couldn’t keep up the pace we expected from ourselves. We noticed that doing new things takes more energy, being overwhelmed takes energy, grief takes energy. Being anxious is exhausting. Simple things just took longer. As a church we did less, and less again as we tried to match our activities to the capacity of our bodies. Many of us slowed down because our bodies insisted it be so.

Some of that has stuck with me, I’m glad to say, but I am blessed with the kind of job where I get to make choices about what I do, when I do it, and how fast I do it. I notice I am kinder, stronger, more peaceful, and make better decisions when I match the pace my body sets. When did we decided there was some other standard all bodies should meet? That we should all be able to keep up with this mythical Norm guy?

Belser continues: “This logic hits hardest against disabled folks who cannot press their body-minds into the narrow confines of the capitalist workday or hustle their way through the gig economy. Let me be clear: some of us could work, if we could bust through ablest stigma and get a callback or land an interview, or secure the right accommodations, or find an employer who’s willing to be flexible. But some of our bodies and minds aren’t built for work, aren’t made to labor. Some of us need to rest; some of us contend with pain; some of us know that all the support in the world isn’t going to put a paycheck within reach. Ableist assumption turn those realties into a referendum on our worth….In a world that fetishizes productivity, disabled people get scapegoated as shirkers and scroungers, as lazy and worthless, as people who fail because we can’t or won’t work. But it isn’t just disabled folks who face judgement if we’re not working hard enough. Ableism doesn’t demand a diagnosis or ask for a doctor’s note. It’s ready to sweep up any body that seems to be faltering, any mind that might not measure up. ..[ p. 52]

Ableism effects us all, by assuming there is one way all bodies should be. Unitarian Universalists reject this idea. We are living into the idea that all bodies are worthy, lovable, just as they are. We challenge ourselves to cherish our diverse minds too! Norm is definitely neurotypical, but we are coming to understand and appreciate Neurodivergence, in ourselves and others.

And so we try to build a world, we try to build communities that welcome all bodies, all minds. This is why we have large print hymnals, and we try to remember to speak into the microphone. This is why we meet on zoom and we meet in person. This is why the Athens church turned the mail room into a wheelchair accessible bathroom, this is why the Cortland church is applying for grants to help with a building constructed before the ADA was even an idea. The work of making a community that truly welcomes everyone will never end- that ongoing process, that aspiration will always be part of who we are.

I’ve joked before that UUs believe “If there is a God, They love everyone” and I mean, now. Right now! No matter how discouraged you are today, how grumpy, brokenhearted, on a waiting list for an appointment for the specialist who is finally going to help with that part of you that is hurting or weak.

You are not a problem to be solved. And though there are real problems in the world that we strive to solve, as individuals and as a community, our faith encourages us to notice the presence of the sacred right now, in this imperfect moment, with these imperfect people. I believe that every life, every moment is connected to the sacred, is woven into the divine fabric that is life. Even when we are having trouble being grateful for our lives, even when we are having trouble loving ourselves.

I think this is one of the most challenging and most important parts of our faith tradition. To love ourselves whole, and to extend that love to all the bodies, and all the minds in their great diversity.