Speech: Lessons from a Deviation

Presented on July 21, 2018 at Eastern Regional Youth Event. The theme for the event was, "My theme song is God's love and justice."

Good evening! I'm so excited to be here with you all, and I'm even more excited that all of you are here. You made the decision to give up part of your summer and travel, some of you for a long time, to come talk about God's love and justice. I'm saying it that way because I'm only a few years older than most of you, but I would not have chosen to come to an event like this when I was in middle or high school, and it's not because I wasn't passionate about God's love and justice. I'll tell you a bit about why that was in a minute, but right now I want to teach you a song. See, I believe in mixing all kinds of mediums together: prayer, preaching, speaking, singing—for me it all flows together, and what with our focus being the theme song of God's love and justice, it feels more appropriate than ever to sing.

I am human.

I am human.

I am human,

And I am here.

We are human (x3)

And we are here.

We are holy (x3)

And we are here.

We need each other (x3)

And we are here.

We are human (x3)

And we are here.

So, the reason I began with this song is actually the same reason I never attended a Regional or National Youth Event. It's because there are some spaces in which I feel less than human, less than myself, and it's important to begin conversations like the one we're about to have by reminding us that we are all human, that while we differ in so many beautiful and amazing ways, nonetheless, we are human. We are imago dei, the image of God.

I suspect we all have some of these disconcerting moments, when we feel out of our depth, amidst a group of people we don't know, or aren't comfortable with. These are especially common in middle and high school I think, and in high school I began to realize that for me, they happened very consistently, and under very consistent circumstances. I felt awkward, invisible, left out, less than human, when I was part of an unfamiliar group of people my own age, and when the first fact they learned about me was my disability. See, I am legally blind, and in unfamiliar places—like a Regional Youth Event, for instance—I need a decent amount of help: getting from place to place, finding food, participating in certain games and activities. I've been open about my disability since I was very young, but eventually I realized that if this was the first thing people learned about me, it ended up being the only thing they learned about me. I stopped being a fellow high schooler in their eyes, and instead became an object: something to take care of. And much as it pains me to admit it, this was especially prone to happen with groups of church youth. I never had friends in youth group, or on church trips, and sometimes not even at my beloved summer camp, because when people have placed you in the category of "needs to be helped," it can be very hard to move from there into friendship.

I have a theory about why this happens so frequently with church people. We in the UCC and similar denominations are very good at instructing people to care for one another. Love your neighbor. Be a good Samaritan. Help those in need. And that's wonderful and important, but we so rarely talk about how to do this. As a youth, I don't remember hearing about respecting the autonomy and personhood of the people we serve, or forming a mutual relationship of care. I hope you've heard some of those concepts before, but I didn't until I started learning about social justice in secular circles.

I started seriously reflecting on this in college—from a disability perspective, since that's the lens through which I experience it, though other people experience it, too. This dehumanizing loneliness that I felt? It's what happens when people's primary relationship to you is one of care-taking combined with pity. People with disabilities are forced into this kind of relationship when people don't believe we have anything to offer. Similarly, it can happen to people who eat at soup kitchens, or receive welfare, or are in some other way "in need." I call this relationship "the Good Samaritan Paradigm." Because as much as I love the story of the Good Samaritan and the message of loving one another across all axes of difference, I think it has been used to divide people uncritically between the categories of the helpers, and those who need help. Too often, we care for one another's physical needs—sometimes extravagantly and with all the good will in the world—but without attention to one another's emotional needs, and without asking ourselves what this "person in need" might be able to offer us.

So, naturally, as a person with a disability, my response to this is to offer something. And what I want to offer you tonight are a few of the lessons I have learned from being a disabled person of faith living and working in disability community.

First, let's talk about that wonderful phrase Convergence Music Project offered us in song yesterday and this morning: imago dei, the image of God. This theological idea comes from one of my favorite Bible verses, Genesis 1:27: "So God created humankind in God's own image. Male and female, God created them."

Theologians have spent centuries discussing what this means, to be made in the image of God. What are the essential aspects of this image, and what elements of humanity are "deviations" from this image? It may not surprise you to learn that for many ancient theologians, being female was a deviation from that divine image. Being a person of color was a deviation. And absolutely, always, having a disability was a deviation.

Thing is, I'd heard this line of thinking before I ever cracked a theology book, and I'm betting most of you have, too. In our media, our politics, our advertising, and more, we learn that male, white, cisgender, heterosexual, and able-bodied are "the norm," and anything else—anyone else—is a deviation. That's what those crusty old theologians are saying: the imago dei is "the norm," the thing we futilely expect everyone to be.

But that, my friends, is one of the most insidious, nonsensical lies you will ever hear. As I hope you all know by now, we are all created in the image of God—not in spite of our differences, but because of them. There is no one, Adam-like norm that constitutes "the Image of God." Rather, everything that we celebrate about ourselves, or that others celebrate in us; everything that makes us glad to be us; everything that defines us and makes God smile: those things constitute the image of God.

And so I am here today to tell you that I am blind, and I am made in the image of God, and my blindness is part of the image of God. My disability is as inseparable from me as my skin tone, my sexuality, and my love of words, and I would not be myself without it. I do not need to defend my identity, to tell you how much I have learned about human capabilities and resourcefulness from my experience of disability. Similarly, you don't need to justify to anyone how you are created in the image of God. You are as you are because God called it good, and if you find it good, no one can contradict you. I hope you see yourself as good.

Next, disability has taught me about one of my Conference Minister Kent Siladi's favorite words: interdependence.

Now I want you to do something for me. I want you to close your eyes, and imagine that you are connected to everyone in this room. Think of all the ways you've supported one another this weekend. Think about the people who have made you laugh, asked questions that made you think, or helped you do something you didn't think you could do. Imagine lines of energy connecting you to everyone here, and remember the ways that you have offered support to others, answered needs, made connections. And now stretch your imagination beyond these walls, and think of your friends and family back home, all the people who have supported you, or who you support. Think not just of the people you know, but the ones you don't know: the farmers who grow your food, the people who clean your schools and public buildings, the doctors and nurses and truck drivers and electricians and construction workers who meet your needs, and the needs of others, before you even know you have them. Imagine that you have touched the lives of people you have never met, in ways that you cannot comprehend. And finally, imagine you're connected not just to the people, but to the plants and animals and the planet itself: that the whole of creation is interdependent with you, and you with it.

Now open your eyes, and remember that that's not imaginary; that's real.

It's often said that people with disabilities are dependent. That we have "special" needs. And to an extent that's true. I need things, like a guide to the dining hall, that most of you don't. But none of us comes into this world alone, and none of us goes through it alone. My disability makes me more aware of this connection, of how lost I would be without the people I love. And most of the time, I remember that many of them would be equally lost without me. We are the body of Christ, each doing our unique part for the work of God, and none of us can say that anyone else is irrelevant. The environment itself shows us the same thing. Ecosystems are interdependent networks in which one change, one loss, unbalances everything, and what we do to the Earth today effects our children tomorrow. We were created to be in relationship with each other, and with all of creation, and to turn away from that is to turn away from the image of God.

The last lesson I want to share with you tonight is this: you have power. As a young person growing up with a disability, I learned very quickly how much power my peers and I had to welcome others, or to abandon them. I've told you how youth your age sometimes made me feel less than human, but there were also groups of youth who made me feel fully myself, seen and known and celebrated. I know that I have done both to other people. I have tried to welcome others as friends and siblings in Christ, but I don't know how many people I have ignored and objectified without realizing it.

My invitation to you is to know your power. Know that you have the power to live out interdependence now, to receive the image of God in others now, to dismantle the Good Samaritan Paradigm now. When you embrace everyone, regardless of what or how much they need, as a child of God, and as a friend, you will truly be singing the song of God's love and justice.

Before I finish, I want to lead you in one more song, a song of interdependence.

What I cannot do, do with me.

What I cannot do, do with me.

Be there to take my hand,

Lend me strength, we both will stand,

With me, beside you,

Doing what I can't do.

What I cannot say, say with me.

What I cannot say, say with me.

Be there to take my hand,

Lend me strength, we both will stand,

With me, beside you,

Doing what I can't do.

What I cannot be, be with me.

What I cannot be, be with me.

Be there to take my hand,

Lend me strength, we both will stand,

With me, beside you,

Doing what I can't do.

What you cannot do, do with me.

What you cannot do, do with me.

I'll be there to take your hand,

Lend you strength, we both will stand,

With me, beside you,

Doing what I can't do.

Editing the Bible: An Accessibility Story

On the bad days, it feels like nothing is accessible to me, but even on those days, there's one thing I know I can do: read.

Privileged with the skill of Braille and the posession of assistive tech, reading is as easy for me as breathing, and I have always loved it. A chance to escape somewhere, learn something new, examine an old problem from a new angle—the possibilities are endless. And all of it far more accessible to me than most other things in my life.

Except when it comes to the Bible.

Well, not really the Bible. My Bible, specifically.

The edition of the Bible I have chosen as my own, the one I read from cover to cover, ponder as a holy text, and study as a scholar, is the Oxford Annotated New Revised Standard Version with Apocrypha, downloaded from my favorite accessible books site. For those who don't speak Bible-nerd, that means that my Bible is longer than most Protestant bibles, because it contains an additional section including several books accepted as scripture by some traditions but not others. It also means that every chapter of this colossal Bible is annotated with notes on translation, history, and possible interpretations, which add another couple hundred pages or so.

In other words, this thing is huge. That's not the inaccessible part, although I'll admit it's not great. My notetaker doesn't like to open huge files, but it's easy enough to split my Bible into smaller ones.

No, the problem is that the formatting of my Bible is shit.

Imagine, if you will, that you're reading a book like the Bible that has several books, each containing an introduction and many chapters divided into verses, and lots and lots of footnotes.

Now imagine that someone has messed with the line breaks. It's not always clear where a paragraph ends, where a chapter ends, where introduction becomes scripture or scripture becomes notes. Sometimes the lines flow together; sometimes the line breaks divide sentences

in half, or separate them from their punctuation

. Now imagine the spacing is wonky too. Lots of extra spaces everywhere, random words    offset    by several spaces for no    reason. Now imagine that this book has been scanned, and the scanner has made some funky mistakes, like periodically turning God into Cod, mixing up vv. 1-11 for w. I-n, and so forth. Now imagine that almost everythingin the bloodyannotationsis italicized and this might be a feature of the original book but you don't care because it looks stupid.

Any of these things, on their own, would be annoying. Altogether, they make the book almost unreadable.

At this point, it might be fair to ask, why not give up on this Bible and go find a new one? There are absolutely other digital editions—hell, better hardcopy Braille editions, if you have a bookcase to spare. And I'll admit, there's some wisdom to this question.

But the thing is, I love my stupid inaccessible Bible. I love it the way I love so many other inaccessible things in my life, like traveling, or buying clothes, or playing computer games. I live in a world that was not made for me, and I love it anyway. I love it, and strive to make it more accessible.

And the thing about this Bible—the thing about this ridiculous I-don't-even-know-how-someone-screwed-it-up-this-badly Bible—is: it's fixable. It's fixable by me. I, on my own, can make my own accessible Bible. The number of accessibility issues that are 100% fixable for me byme might be exactly one.

So off and on for the past three or so years, I have been engaged in reading and "editing" my Bible. Deleting the extra spaces, fixing the line spacing, clearly marking chapters and note sections, adding in markers I can use a search command to find again—basically turning this stinking pile of poo into the most accessible thing I've ever seen, and at the same time reading the whole damn Bible.

It's a challenge, of course. Reading the Bible on its own isn't easy, and the editing work gets mindnumbing to say the least. But the accomplishment I feel when I finish editing a book, knowing that the next time I need to look up a verse I'll be able to find it and its notes with ease—that's worth it.

I believe everything should be as accessible as possible, but I have some particular feelings about the Bible. The Bible is one of the foundations of Christianity, and everyone should be able to access it if they choose. My Bible will, eventually, be fully accessible to me. I may have chosen the harder path to get there, but I    will

      get there.