Friday, May 3, 2013

Disability and Identity

Hello all.  So quick housekeeping note: I've been traveling a lot, but I just picked a winner for the exclusive content booklet. I'll be contacting that person today since it turned out to be someone who tweeted. So keep an eye out for that if you entered!

Okay, now on to some other stuff.

Recently I got my first guide dog. She's an adorable ball of love and affection and she's crazy smart. We've only been working together a month, but she goes everywhere with me and she's already made a huge difference in the way I travel. I'm so glad I made the decision to get her.

But along with the good, there comes some bad.

Dogs are different than canes (my last form of mobility).  Canes don't need to go potty. Canes don't cost money to feed or groom. Canes don't try to go sniff other dogs when they're supposed to be working.

And canes can be folded up and put away when you don't want people to know you're blind.

In some ways, I have what could be called an "invisible disability." As in, you can't look at me and tell that I am disabled. This can be good, but it can also be really, really frustrating. I've been accused of "faking" my disability before because I have some residual vision and look at things. I've been yelled at for sitting at the front of the bus when that's for "disabled people! Not you!" because I am young and healthy and I don't "look disabled." (By the way, telling someone they "don't look disabled" is not a compliment because it implies that looking disabled is a bad thing. So don't do that.)  Having an invisible disability can suck, but in some ways, I liked it. Because it also meant my blindness didn't have to be my identity. It meant people could meet me and not know. It meant I could "pass."

I want to clarify something here before I get any farther. I am not ashamed of my disability. I never have been, never will be. This is not a thing of pride.  I liked hiding it, being able to pass, because when people don't know I'm blind, they treat me like anyone else. I like that. I like being treated like a person - not like a BLIND person.

When you have a visible disability, it becomes your entire identity. People don't see YOU, they see your cane or your wheelchair or your hearing aid.  You are seen as "other" - someone to assist and pity. You are the subject of a thousand misconceptions and stereotypes. Everything you do is seen as "inspiring" and that's the part of you that everyone wants to talk about, no matter how successful or interesting you are outside of your disability.

So yeah. Sometimes, I liked to hide my cane and pass for an able person. Sometimes I hated myself for it, too.

But now that I have my dog, that's not an option. I can't fold her up. I can't hide her (at least not well - we're talking sixty pounds of fluffy German Shepherd. Not the easiest to stash away.) My ability to pass is, for the most part, gone. I say "for the most part" because for some reason a lot of people assume I"m training my dog, not actually using her. And when I correct them, I again get the "Oh, wow! You don't look blind!" thing. Again, not a compliment, guys.

Now my disability is very apparent, where as before, with the cane, it was only obvious part of the time, now it's obvious (to most people) all of the time. All of those negatives of invisible disability are gone - no one yells at me on the bus, for example - but all of the negatives of visible disability are piled on at full force.

Especially the identity issue.

It sucks to know that when people see you, they don't see a person, they see a disability. I have a lot of worries and fears about being honest about my disability because of this. I feel like I"m taking a risk every time I write a blog post about it because I'm opening the doors for assumptions and questions and comments about how "inspiring" I am for "overcoming" my disability. (Please leave your inspiration at the door, folks. There is no reason to be inspired by me living a normal life. Loads of disabled people do it every day. It's honestly not a big deal.) But I've let myself be pretty candid on here, and until I start seeing these negative things happen, I'll continue to do so.

The thing that really bothers me is, there are a lot of things about disability that I want to be able to talk about openly - the guide dog process, my thoughts on accessibility and technology, political issues regarding the disabled, etc - but the thing is, I don't want to put myself in the role of "spokesperson." Unfortunately, that's sort of what happens whenever you're an outspoken member of any minority group. People like to take your words and assume they represent the whole of your community. "I know this blind person thinks this, so that must be how they all feel."  I'll be unfront and I say that I have very different views from some other blind people on many different issues - just as I have different views from other white people, other women, other Christians, etc etc etc.  I don't speak for the whole community, nor do I wish to.

The other thing about speaking out is that once you start talking about disability, that's all people want to hear about.  I recently had a thought about making some youtube videos discussing disability related issues and accessible technology, but then I thought, "But I just want that to be something I do, not who I am."

I don't want to be seen as a Blind Person. I'm a person. I am a woman. I am a feminist. I am a writer. I am a vegan. I am a Southerner. I am a liberal. I am an animal lover. I am a reader. I am a fan of TV and film. I am a brunette.

I also happen to be blind.

It is not my identity. It is one part of a whole. One piece of the puzzle that creates me. Yes it informs my identity, just as many of the things I mentioned before it do, but it isn't who I am. I'm okay with people knowing I'm disabled, just as I'm okay with people knowing I'm all of those things above. I just wish it wasn't the one thing strangers focus on. I wish I could talk about it more freely without fear of it consuming my identity.

Unfortunately, I think this is true of a lot of minority groups. POC, LGBT, disability, etc - people find the one part of you that's "different' and zero in instead of seeing the person as a whole. Our society has come a long way over the past century, but we still have a long way to go.


13 comments:

Heather Anastasiu said...

This is a really great, thoughtful post. I have a chronic illness that puts me in a wheelchair occasionally and it's so weird to see how differently people respond to me when I'm in the chair than when not. It's like a barrier goes up, in part because people just don't know HOW to respond. I guess I can sort of get that--illness and disabilities can wig healthy people out if they haven't experienced it first hand or in their family. People don't know what to do with it if it's not attached to an inspirational story, since that's the way it's most often presented. That's the popular discourse about disability--it's only kosher to talk about it when we can put the positive inspirational spin on it. So I like the fact that you're up for talking conversationally about it as just a part of who you are, not the whole.

Book Blather said...

That was a really thoughtful and interesting post. I have to say, not to be all 'inspired' or anything, but getting published as a blind writer and writing as well as you do... just wow. Okay, awe over. One of the things I love about your books is that they don't pull any punches, so please don't let concerns about how people will perceive your discussing issues that affect disabled people change what you want to say on Youtube, on Blogs etc. Sometimes what you need to break through a stereotype like "Chinese", "blind", "democrat" is not one co-herent voice, but many different voices. Now I have to give you one request: one day, write a disabled heroine? One of my favourite cowboy romance authors is Catherine Anderson and she's done some fantastic disabled heroines and I've learnt a lot from her novels. I've learnt that ponies can be great guide animals and have longer life spans and lots lots more. I don't just read for a good story, I want to learn how to relate to the world around me better by reading, and books with characters who are different to me help me do that. And I think you'd have some great insights. Okay, pleas over! Have a lovely day and write something, anything!

Kody Keplinger said...

Book Blather - Thanks for your thoughts! I have definitely considered writing disabled heroines before, but timing is a big thing. I don't want to pigeon hole myself as "that blind girl who writes blind people stories," If that makes sense.

One point - you said "I have to say, not to be all 'inspired' or anything, but getting published as a blind writer and writing as well as you do... just wow." I know you mean it as a positive, but this kind of comment is actually something I was talking about. I'm flattered whenever someone is inspired by me being a writer, but I'm bothered when people are suddenly MORE inspired because I'm blind. Being published as a blind author is no different than being published as a sighted author. My agent didn't know I was blind until I told her. My editor didn't, either. It's not a big deal. It doesn't impact my ability to write. So me being published as a blind author deserves no more "wow" than me being published in general. Does that make sense?

Jess said...

Thanks for sharing this! I know exactly how you feel, provided you swap blind for deaf and dog for hearing aid. This part in particular really resonated: "I feel like I"m taking a risk every time I write a blog post about it because I'm opening the doors for assumptions and questions and comments about how "inspiring" I am for "overcoming" my disability. (Please leave your inspiration at the door, folks. There is no reason to be inspired by me living a normal life. Loads of disabled people do it every day. It's honestly not a big deal.)"

hannah moskowitz said...

Great post, Kody.

Anonymous said...

I actually love it when you post about this, because you're honest about it.
I know you don't like people praising you because of your disability, like being blind = free pass. But I think some want to thank you for being an inspiration regardless of the merit you have on your own as an author. For a lot of people, they need some encouragement that they don't have to be identified by whatever disability/limitation/etc they will carry to perpetuity.
You are a published author, and a great one at that. But I'd like to give a shout-out that you are able to hold your own among all the other amazing authors in spite of the sort of things that would cause others to give up on it. You're not an amazing author *because* you're blind and still managed to write ... rather, you're an amazing author, and you haven't let being blind keep you from doing everything you're capable of. Can I compliment that?
There are so many "disabilities", physical or otherwise, that people think will keep them from success. I appreciate your honesty in sharing about yours, but I just wish that I could say thank you without questioning how you'll take it and whether you'll understand where I'm coming from.
You don't want to be the flag-bearer for this, and that's totally understandable. But please don't deny me the chance to thank you for reminding me that it doesn't matter the labels that I may carry; my dreams are allowed to be bigger than I (or others) may see.

quix689 said...

I didn't know you were vegan! I loved you anyway because your novels are fantastic, but I like you even more now. Sorry, off-topic, but I loved your list of descriptors! It's always exciting finding out that you share a lot in common with an author you admire.

Anyway, back on topic - thank you for writing this post! I always love reading about experiences that are different from my own. I think that's the only way people can really grow and learn, by learning about other people and being able to acknowledge our differences without alienating anyone.

I can understand your reluctance to be seen as a spokesperson, but I would love to read more of your thoughts on disability-related issues. I think the more people learn about "other" things, the less "other" they eventually become, you know? There will always be some people who just don't get it, but getting the discussion started is always good, I think (not that other people aren't talking about these things, of course). Or maybe I'm just being overly optimistic. I don't know.

Anyway, great post! :)

Leonora said...

Hey Kody!
I think this was very interesting. I know what you're talking about. I am blind myself. And I was born in Kosovo where disabled people are pitied alot more than in the western world. I have lived in Sweden since I was one-year-old. But I have been to Kosovo a few times. And what I hate the most is people's assumption that I am not able to do things that any other person does. And when I do them, that makes me so inspiring. So ambitious, so intelligent you name it.
But I don't think you should let people dictate what you blog about. What they think is their problem. You have been very clear on what you think about the matter. And you were very clear when writing that you don't want to be inspiring because of your disability. Even so, some people keep writing that it's so cool that you're blind and got published. I know they mean well. But writing such a thing after you expressed that you don't want that sort of comment shows that some people don't understand even when you write it out like you did.
I don't mean to be rude. But I think it would be good to actually read the post through before posting a comment.
Last but not least, what's your dog's name?
I'm asking because I'm curious and because I was wondering about another things. In Sweden guide dogs are trained in two years before it's sent to guide someone. Which means they already have a name. Does it work the same way in the U.S.?

Anonymous said...

I am a writer who happens to be blind. I don't like to write about my blindness exclusively as it doesn't define me, but it is a part of who I am. This post was helpful. I'd be interested in hearing more of your thoughts on how people treat you differently and what ways you think those barriers might come down. I was sighted for half my life and have ben blind for the other half so I know what it is to be treated different. I've traveled with cane, dog and sighted guide. Because I don't "look blind" I am often confused as you describe. Funnier- and something you may have encountered- is when I've been mistaken for other blind women I look nothing like- once even being argued with that I certainly was so and so as if I wouldn't know who I really was since, of course, I'm blind and must be deficient. Kind of funny in a warped sort of way. Please keep writing. I enjoyed this post and knowing I'm not alone out here.

Rebecca said...

Hi Kody. I found this post really, really interesting, especially after recently finishing the novel "Openly Straight" by Bill Konigsberg, which is all about the protagonist wanting to separate himself from being continually defined as gay (i.e. the GAY soccer player, the GAY writer), versus all the other things that make up who he is. I admire you being so honest, both in sharing personal details on your blog, but also about the frustrations in dealing with others' daily perceptions. And on a COMPLETELY separate note, other than the e-novellas, when might your next novel be coming out? *fingers crossed it's soon!*

Erminia Cavins said...

Yeah, people shouldn't see you as just blind. More importantly, they shouldn't be blind to our condition, wherein a lot of us can't still avail of proper health and social security. Though this condition can still be reversed; if there's a will, there's a way.

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