Saturday, August 6, 2016

4 Reasons Not to Talk to Me About Bionic Eyes

When people first learn that I'm legally blind, they have a variety of reactions, some of which I may go into detail about in future posts, but one that most sighted people probably don't think about is the one I think of as the "bionic eye subject change." The situation goes something like this:

Me: I'm legally blind.
Stranger: Oh. What does that mean?
Me: (Explains; medical terminology, legal definition of blindness, vague description of what I see...)
Stranger: Oh. Well, but medical technology is improving all the time, you know. You'll probably have a bionic eye in a few years.

Here's the thing. I'm perfectly willing to talk with people about medical technology and the possibility of bionic eyes, after I've known them for a little while. I don't like talking about it with people I don't know well, particularly when they've just learned about my vision and therefore don't know a whole host of things, from the causes of my sight loss to how I feel about it. Here are some points I wish people would consider before talking with me about bionic eyes.

1. Medical technology is expensive, especially new technology. Just because procedures restoring eyesight exist doesn't mean they will be economically within my reach any time soon.

2. The causes of sight loss are incredibly varied, and not all of them can be addressed by the technology currently in development. In fact, the brains of people who have been blind from a young age may not even be able to process visual data. Most people talking to me about this technology don't know whether it would even work for me, and they usually don't think to ask.

2 B. And I, as someone very interested in my own eyesight, generally do know these things, because I've heard all of this about a thousand times and have done my own research on it.

3. The introduction of this topic in this way assumes that I want my vision back. This is really hard for a lot of able-bodied people to understand, but most of the time I'm pretty content with my life the way it is. Personally, I have no idea whether I want a bionic eye or not. All I know right now is that the idea frightens me more than it excites me, and I'm not even sure why.

4. Before the introduction of bionic eyes into the conversation, we had been talking about my disabled present. After it, we're talking about my potentially non-disabled future. The implication in this topic switch is that one of these is more important, or at least more comfortable, than the other. What really frustrates me about the cure narrative—even more than the fact that I might not want to be cured—is that it assumes that cure should be the goal of my life. Even if I did strive to regain my vision, I'm really a lot more interested in living in the present, solving problems related to my sight in the present, and I'd really like it if the people in my life were, too. When someone stops talking about my vision now in order to talk about my improved vision in the future, that tells me that they are not here for me in the present, not able to be my ally now, when I might need them.

***

 Other visually impaired people may have very different opinions on the topic of bionic eyes. For me, it comes down to what I want out of life and out of relationships. I want to seek justice and opportunity for myself and other disabled people now, regardless of how disabled we may or may not be in the future, and I want the people around me to support me in that. Bionic eyes just don't fit into it.

Monday, July 27, 2015

Anger

Seven. Scraped knees and princess skirts, and anger. Running outside—didn't want to stay in and read, there was nothing to read—and if I ran into anything the corkbottle glasses would save my eye, and there would always be anger. New friends, new teachers—we'd just moved—new town, didn't like the town, didn't want to leave the old one, and there were all these other new people in school, new braille teacher, and new woman who read my braille. Didn't like them, didn't want to talk to them, missed the old people, and everything was different now, everything was different ...

And I was different. Not different since the move, different since ... forever. What to do, what to do with a world of people who could go to the library and I ... I could read the same five braille books in the school library, again and again, looking for some extra piece of story or information in their fourteen pages each. Could have my parents read me chapter books, but it wasn't the same, wasn't the same, and it wasn't fair, wasn't RIGHT! Wasn't right that they could all see to run and climb and I was starting to be afraid, starting to wonder what happens if I don't see, if I fall, if I crash. IT's NOT FAIR that the world is large and full of small things, full of shapes and colors and things behind glass, full of words words everywhere words that I just want to read and IT's NOT FAIR.

And so I cried. And so I screamed, threw tantrums. Because I was a selfish little seven-year-old, and because I wanted what I had never had, but it seemed like everyone else did.

But little girls are not supposed to be angry. Ah, no. "Use your words," they told me, and, "Calm down," and "Go outside," and, "Well if you're going to be like that ..." So I learned that pretty, white, well-spoken girls and young women get what they want by articulate asking, not by anger.

I am glad I learned it. I am glad to know what diplomacy and empathy and compromise are. I am glad.

But I learned more than that. I learned to smile when what I wanted to do was slap. I learned to be content with less than I deserved. I learned that "equal access" is only so equal and only so accessible. I bought contentment at the price of anger.

And now I'm angry.

I learned this week that a book about disability studies, which I downloaded from Bookshare, one of my favorite accessible book websites, is incomplete. It is missing an entire chapter, and the referential text for an entire other chapter. This is because Bookshare received their source material directly from the publisher, who apparently chose not to include this material in the PDF which they sell online and make available to accessible sites.

Who the HELL's bright idea was this? Is chapter seven a special privilege reserved for sighted people? Were the poems of chapter five so artfully arranged that it would have been a sin and a crime to convert them from images into plain, readable text? I deserve the same text as anyone else. So does anyone who downloads an accessible text from Bookshare because of a reading-related disability, and anyone who decides to buy an online PDF instead of a physical book, whether because of accessibility, financial reasons, environmental concerns, or any damn reason at all. I can't believe I actually have to say this. It's a book about disability studies, God damn it, and I, a disabled person, cannot read all of it.

I have grown up too ready to accept inequality for myself. I am too ready to believe that if I don't have the entirety of a book, or if the braille menu at the restaurant is always out of date or not there, or if the busy road I must cross has no audible crosswalk—these things just happen. I suspect I am not alone. It's much easier to accept than to fight. You don't get angry. You sigh and say, "Well, that's just the way the world works."

No. It isn't. This is not the way the world works. This is the way the world fails to work. Fails to work for me, and a whole host of other people with disabilities. And, for that matter, our world doesn't tend to work very well for you if you are a person of color, queer, trans, an immigrant, poor, female, or any of a number of other things I could name. There's life being hard and unfair, and then there's living in a society that was actually planned without considering people like you.

Later, I will be more evenhanded about this. Later, I will learn why the publisher of this book of mine made the choices they did, and perhaps I will be satisfied. I will politely and reasonably request an answer, and a resolution of the problem. I will admit that the publisher, and the world, is not and should not be beholden to my desires, and that given that society as a whole actually has very little idea what most disabled people need, a little education can go a long way. I will also admit that I am in an incredibly privileged place in order for this to be what I'm angry about.

Later, I will think these things. But there must also be a time for anger. My anger is loud and fierce, and it gives me strength. My anger reminds me what injustice looks like, even in so small a thing as a single book. My anger knows, as I do not, that even though that's what started this, it's never just about a single book. There is a furious seven-year-old inside me who wants to throw a temper tantrum, and I'm inclined to let her. Anger, despite what I have always been told, is productive. Anger gets things started when it's easier to just let things be. I am sick of just letting things be, because if I don't say and do something about them, they will only continue to be: be unfair, be unequal, be wrong. I do not intend, or wish, to use my anger as a weapon against Bookshare, or this publisher, or anyone at all. My anger is a tool best used within myself. It is energy, it is drive, it is power. It is, perhaps, community building, if it's sparks are caught by others.

Deep within me, a seven-year-old screams, "IT's NOT FAIR!" and I scream with her. I am a pretty, white, well-spoken young woman throwing an articulate temper tantrum, and you know something?


It feels amazing.

Wednesday, July 1, 2015

What Even Is This Blog?

This is the blog post where I set out to explain who I am, what this blog is, and what will be on it. And then I mostly nerd out about fantasy.

I am a reader, writer, and lover of fantasy; it's a family trait. I'm blaming both nature and nurture for this one. My parents' reading habits both tend towards the fantastic, and they started me and my brother on fantasy novels almost before we could talk. There are many reasons why this genre attracts me, not least because it reminds me of my childhood. More than that though, fantasy offers up entire new worlds, worlds of hope and magic that I have always longed to be a part of. It's not that anything is possible in these worlds, but that you don't know from the outset what is and is not possible. In the real world, we often feel as if we know the limits of possibility, even when we are proven wrong.

And, too, fantasy deals with the struggle between good and evil. When I was originally thinking about this post, I was thinking about how, in the most basic forms of fantasy, we always know what evil looks like, who the bad guys are. And therefore we always know who the good guys are, and we also know that they will win. This, I thought, is comforting, and is one of the reasons I'm drawn to fantasy.

That's still true, but I actually think that's one of the more minor reasons I care about fantasy, especially given that in the fantasy I read nowadays, good and evil are highly complex, just as they are in real life. You don't always get told who the bad guys are, and even if you do, that may or may not be the whole story. In novels and in the world, people are complicated and multifaceted, and must be judged not based on the label of "good" or "evil," but by their actions, which usually mix the two in ways that are much more interesting than a simple clash of forces.

No, the feature of fantasy that I find much more interesting, and much more relatable to our world, is one that I hadn't noticed until I wrote last week's post. In thinking about my own need to take action against the racism in our country and my confusion about where to start, I realized something about the characters of my favorite fantasy novels: They do things. It's not just that good and evil exist in fantasy, it's that when evil is identified, rightly or wrongly, people who consider themselves good guys take up swords—or spells, or voices, or quill pens—and attempt to do something about. They don't always do the right thing, and they don't always do it well or for the right reasons, but they do something. Frodo carries the One Ring; Harry and his friends go sneaking around Hogwarts, solving mysteries and thwarting Voldemort. You can argue that often times, heroes like Harry Potter are destined to fight evil, but in most cases they also choose to do so, and that choice and that action usually end up meaning more than their destiny.

It is this aspect of fantasy—being proactive in the face of evil—that inspires me today, and has as long as I can remember. I didn't learn about injustice from fantasy; anyone who knows much about the social and political landscape of our country and our world, even as a young child, knows about injustice and evil. What I learned from fantasy is that injustice can and must be fought, that whether we are born the chosen one or not, whether we are born into privilege or not—and perhaps especially if we are not—we all have the power to work for change.

What I realized this week is that my love of fantasy is inextricably tied to my sense of justice, and my drive to see that justice in action. And that, in short, is what will be on this blog: my thoughts about fantasy, justice, and life, in whatever form those thoughts take. I foresee essays, stories, rants, song lyrics, the occasional poem, reviews, and more, all with the aim of making fantasy better represent the diversity and complexity of our world, and making our world a more accepting and just place. And in case that all sounds quite grand and lofty, I will probably also write about whatever comes into my head, from religion, to cats, to what I've been watching on Netflix.

And what I happen to be reading. There will probably be a lot about what I'm reading. At the moment, for instance, I'm reading all twelve of Andrew Lang's Fairy Books, so the next few posts will probably be about patterns I've observed in these stories and my own retellings of them. If you have a favorite fairy tale you'd like me to look at, critically or creatively, let me know in the comments.


Welcome to the blog!

Wednesday, June 24, 2015

If You Can Only Read One Post About the South Carolina Shooting, Don’t Read This

If you are a person of color, you probably don't need to read this. You probably don't need to hear one more white girl talking about how upset she is by the South Carolina massacre when she is much closer to its cause than to its effects. And, quite honestly, if you're a white person, there are posts you need to read more than this one. Posts like the ones I've listed below by people of color responding and reporting with all their rage and grief and exhaustion. Their words strike closer to the heart of this terrible event than mine ever could. I have written what I have because I had to—for myself, and to tell anyone who wants to know where I stand, and where white people like me need to go.

So, if you haven't read any of these articles, read them, and then if you want to, come back and read my words. Here they are:













I thought the first post on this blog would be about fantasy writing, social justice in general, and me, as a writer and a person. And then a white man walked into a historic black church and killed nine black people. And I realized that if my blog was going to launch anytime in the next month, the first post had to be about this.

I have wept a great many tears over this, partly from grief, partly from shame, and partly from the knowledge that my tears are far, far from being enough. This massacre is one more symptom of the racism and violence endemic in our culture, and I am acutely aware that I have not done enough to combat it. And by my inaction, I have contributed to this culture, the inevitable consequence of which is violence and death. I, and every white person in this country, bear a collective responsibility for what happened in South Carolina, and in Ferguson, and in New York, and in Baltimore, and what happens every day to people of color all across our country for no reason other than the fact that this country as a whole values white lives over black and brown lives.

This is nothing more or less than true, and I need to do something about it.

I write this, knowing that it will seem weak and trite. I have no action plan, not even many concrete next steps. And I know that at this time, this is not and cannot be the soul preoccupation of my life. But I also know that everyone could be doing something, or doing something better, and it is that which I promise in this post: I will do better. I will call out racism when I see it. I will look for racism when I cannot see it clearly. I will own up to my privilege and will identify and inhabit spaces that reject that privilege. I will donate my money and, I hope, my time to organizations that promote justice for people of color. And of course, I will write, but I will privilege the writings of people of color above my own.

I will also make mistakes. I will speak when I should have been silent, and I will be silent and inactive when I should have spoken and done. I will fail and be reproached for it. And then I will take that criticism to heart and try again.

This is my promise, and I want everyone, people of color and white people alike, to hold me to that promise. I want white people to join me in this promise. So many of us have been failing the black and brown people who live among and beside us, again and again, upholding a culture that murders them. No more.


If you are reading this, and have a suggestion for something that I, as a legally blind student with limited time, can do, please let me know. I want to keep my promise and have it mean something.