Tuesday, November 8, 2011

A Confession About My Disability

So I know I promised another giveaway, but that'll have to wait another week. Because today I'm posting about something else. Somethign really important to me that I want to finally share with all of you.

This is a post I’ve avoided writing for a long time. I thought it was best left to other people – better people, smarter people than me. And yet it’s a post I’m perfectly qualified to make. A post that I see no one else making. And as much as it makes me uncomfortable, I’ve decided to write it. So here we go.

Some of you may know that I am legally blind. To clarify legally blind does not mean that I see total blackness. In fact, about 9/10ths of the people classified as legally blind have some varying amount of vision. On my end, my visual acuity is about 20/400. If you know what that actually means, you’re a smarter person than me. For those of you who don’t know what that means, I will try to explain how I see to you, at least a little.

Take a look at the world around you. Now imagine everything being really blurry. Imagine some of the colors blending together a bit. Imagine that some colors (purple and brown, green and blue, pink and orange) look so alike that you have trouble telling them apart. Imagine you have terrible depth perception. Imagine that you have tunnel vision and you can’t see too far to the side or up or down without moving your eyes in those directions. That’s how I see during the day.

Now, you’re probably thinking “That’s awful!” but don’t. Don’t say that. Don’t think it. Because it’s not. When you’re born that way, when you don’t know better, it doesn’t seem so bad. And I was born this way (cue Lady Gaga). I’m not saying it doesn’t affect me, because it does, but it’s no tragedy. It’s not even that difficult to overcome when you’ve been overcoming it all your life.

I can’t read average sized books without a magnifier. My computer has magnification software. I use a cane. I can’t see at night at all. Yes, sometimes it sucks, but this is just my world. I’m used to it.

So why am I writing this post? Why am I framing it as a confession?

Because, in a lot of ways, it is. Three years ago it wasn’t. Three years ago I signed up on AW with the handle Blind Writer. Three years ago (or less actually) I blogged about a night where, despite my vision impairment and my friends lack of a sense of direction, we walked to a concert in the dark in a city I’d never been in before. Three years ago I was . . . well, not “proud” to be blind, but open about it.

That changed two years ago when an article for a college newspaper that was intended to be about me and the sale of THE DUFF ended up being something along the lines of “Oh, look, we have a blind girl on campus! Isn’t she amazing BECAUSE SHE’S BLIND? Oh, yeah, and she wrote a book.”

I was infuriated. Beyond infuriated.

Let me be clear about something. I do not want pity, nor do I want to be admired for the fact that my eyes don’t work properly and yet I – gasp! – live a normal life. Thousands of legally blind people live normal lives. Many are more talented and more creative and more intelligent than me. Their disability shouldn’t be what makes them impressive or admirable. It shouldn’t even be a factor.

Do you get called impressive just for living by yourself? For going places on your own? I don’t think so. So why should I be?

It was after that article in the college newspaper that I stopped talking about being blind. I hid my cane in pictures. I refused to answer questions about my vision in interviews. (I had a local newspaper reduce a full article about me to just a tiny write up because they were so disappointed I wouldn’t talk about my vision. Apparently getting published right out of high school is small stuff compared to not getting lost on my college campus or something.) I started memorizing passages of my books to read at signings so I wouldn’t have to have a friend read for me and draw attention to the disability.

I pretended I wasn’t blind, basically.

I didn’t do this out of shame. I’m not ashamed of being blind. I did it because I didn’t want it to be part of my identity. I am a person. I am writer. I am a girl. I am a Southerner. I am a music lover. Way, way, way down that list you might see “I am blind.” Of course it is a part of me, but it isn’t me.

But our society loves “tragedy.” In my experience, when I’ve been open about my visual impairment, I suddenly lose my identity to it. I am no longer “Kody” or “a writer” but instead “a blind person.” That moves to the top of the list instantly, even though it is one of the least important parts of my life.

So why am I talking about it now?

Well, there are two reasons. First, because dear God someone has to. Someone needs to stand up and say how ridiculous it is that our society treats disabled people as “disabled” rather than “people.”

And the second reason I’m doing this - the most pressing reason – is that secrets never stay secret forever. People will find out about my visual impairment. People will talk about it, even if I don’t. And I’d rather take control of the situation and lay out the facts rather that let people thrive on assumption.

So, one thing I want to address before I finish this post is a question I got on this blog a few years ago – a question I didn’t answer because, at the time, I was so offended. The question was something like:

“But if you’re blind, how can you write books?”

Well here’s you’re answer – I just do. The two things are so unconnected, so separate, that the question is equal to “But if you are lactose intolerant, how can you watch TV?”

My writing has nothing to do with my disability. And I want to be recognized for my writing, not my disability. When I die I want people to say “Kody Keplinger was a great writer” not “Kody Keplinger was blind and she still managed to write books!”

I want my work to stand on its own, which is why this post is so terrifying to write. Despite everything I say here, I may still be condemning myself to a life of being known as a blind author. It’s not a life I look forward to, and yet this post had to be written. I had to come forward on behalf of myself and of other blind artists out there.

I’m going to wrap this up because it’s an insanely long post, but there are a few last points I want to make.

• I will take questions (if you have them) in the comments of this blog post.

• After this, however, I will not be answering questions about my visual impairment in interviews, on twitter, or anywhere else. I want to keep that part of my personal life separate from my public, professional life.

• All this being said, I encourage you to look up information on blindness and the reality it inhabits, as opposed to the “reality” the media creates. Look up the National Federation of the Blind if you’re interested.

And that’s it. God, that was hard to write. We’ll see if I actually post it. If I do, I want to thank you guys for reading this post. Just remember, this shouldn’t make you see me differently. I’m the same Kody. The same person. This is just one, small part of my life.

Thank you.


110 comments:

Loretta Nyhan said...

No questions, just a comment.

You, my friend, are awesome.

L

Kody Keplinger said...

Thanks, Loretta! You're awesomerrrr.

Susan Adrian said...

Brave post, Kody.

It certainly wasn't the most important thing I noticed when I met you in NY! (that was day-am, this girl is fun and full of energy, if I recall correctly) But I get how people let it take over the story.

That's 20/400 *with* correction, right? I'm 20/400 without correction, but can see 20/20 with. Big difference.

*~*~*~

Trisha Leigh said...

Beautiful truth, Kody. Proud of you, this took courage. I will say that I was one of the unaware before I met you in NYC, but I never thought about it for a second after we started talking.

You're awesome.

Kate Hart said...

Not gonna lie, my friend-- I was worried when you said you were writing this post, but this is perfect. <3 <3 <3

Kody Keplinger said...

Susan - It's 20/400 pretty much either way. I used to wear glasses, but they didn't improve my vision even a point, so I stopped.

Trisha - Thank you!!! <3

Kody Keplinger said...

Thanks, Kate! I had help, not going to lie. It was a really, really hard post to write.

Stephanie Allen said...

I just want to tell you how awesome you are. And that I admire you for being brave enough to write this.

Chelsey said...

It can be so hard to own up to a disability. Congratulations on doing it. I'm legally blind without my contacts, and not fully corrected with them. I've had days of going without them, and people who can manage with low vision amaze me. I know it's what you have to do, and not anything spectacular in your life, but still. I admire.

If you ever want someone to chat to about disability-related stuff (or Shakespeare related stuff, or any stuff, really) give me a chat. :)

Also, come over to Sense and Disability some time. www.chelseyblair.com

Laura Harrison said...

Kody, you are amazing and the way you took about your vision is the way i do.

I'm not blind but, i AM disabled and also i write storys, i hope to be published soon.

Your amazing, thankyou.

Stephanie S. Kuehn said...

Beautiful post, Kody! You're the best and you are very wise!

Kody Keplinger said...

Thank you everyone!

Chelsey - Please don't admire me for that, or think its spectacular. It really, really isn't. Seriously. I'm as average as any other person.

Kate Scott said...

Kody, thank you for this post. I am not blind, but I do have a different disability and I understand the desire to not want to be defined by the things you can’t do but instead by the things you can. And girl, you can write! I recently came out of the disability closet when I wrote a book about a disabled teen (currently out on sub). While I understand all the reasons why you don’t want to talk about this, I hope at some point you will write about it.

I have seen very few YA books about blind teens. I can only think of two, and neither of them expresses the honest sentiment you showed in this post. As a fan of your writing, I would love to read a book by you somewhere down the line that has a blind character (who is also an amazing character capable of doing many wonderful things).

Part of fighting the unrealistic assumptions people make about disability is living outside the stereotypes. You are already doing that. Your talent as a writer has giving you a platform to express your feelings and ideas. If you have feelings and ideas about being more than just blind, you should never be ashamed to write them down. The rest of the world should be ashamed for not having the vision to see past your disability and recognize the talented young woman that you are.

Rachel Bateman said...

Kody, I now think you are even more awesome than I did before. Not because you are blind, but because you had the courage to write this post. Kudos to you.

I am color-blind and people often ask me how I function not being able to see colors correctly, as if I would ever know a difference. I can only imagine how much worse - and annoying - that questioning is for you.

(For the record: 20/400 means you see things that are 20 feet away the same way a person with perfect eyesight would see them if they were 400 feet away...not smaller and stuff, but the resolution your eye gets is as if the object were much, much further away. It's kind of an abstract way of quantifying how we see things, but it's the best medicine has to offer at this point, so we use it.)

Jo Ramsey said...

Thanks for sharing this, Kody. I love what you said about people with disabilities being *people*, not their disability.

Kody Keplinger said...

Kate - I honestly doubt I will ever write a book with a blind MC. Don't get me wrong, I wish there were more accurate depictions out there, but since this is the ONLY way I have ever seen, it would be hard to put that into words and describe the world around my MC in a way that's diffrent from how I describe the world of my other characters. I think it's a task better left to someone who can see both sides - no pun intended.

Tere Kirkland said...

Ugh, how infuriating that article must have been! I remember you being "Blind Writer" on AW, where you posted comments and novel snippets of better quality than writers twice your age. I never had any doubts that you could do something as difficult as write novels. (Of course, I also thought it would be a few years before you got published, but I was dead wrong!)

You have something very few writers can claim: you had a book deal before you even got to college! Don't ever let anyone take that away from you, or diminish your accomplishments by focusing their attention on an irrelevant attribute!

XOXO
Tere

John Ross said...

That is Very Awesome! Being published right out of high school!? I would never have dared imagine such at that age.

Oh and edges are an imposed visual for me also, to a lesser degree. It's not how you can see, but how you can envision that counts. But, you obviously knew that.

Good post, thanks.

Kody Keplinger said...

Rachel - I'm partially color blind, actually. I get that part from my Dad, who is extremely color blind. I mean, yeah, color blindness is annoying (Oops! That shirt DOESN'T match that scarf! Oh well!) but it definitely isn't something that holds a person back.

Thanks everyone for your comments and thoughts!

Sarah B said...

Thank you for writing that. Never so happy to read a long post. And I loved the lactose-intolerant comparison. People do that to others with so many things: disabilities, race, ethnicity, religion, even having kids (or not). While all those things add color and depth to what we write because we would not be who we are without them; they do not define or limit us.
Brava!

Rida said...

I hadn't known this. And JSYK, it doesn't make a difference to me. I love the books you write and I love the way you see the world- maybe it's because you see it differently from the rest of us that you write differently, too.

Keep writing awesome books and inspiring people, Kody. You're awesome!

Catherine said...

I'm actually someone who knew, but didn't know the details, and decided that really, what did all of that matter when there were shiny, awesome words to read? When I think about what most rendered me awestruck about you at the very start, it was more to do with how you were so young when you began. (Because now, you are totally an old lady.) And then, what kept me hooked is your fabulous sense of humor and characters that I seriously wish I could hang with.

But I am glad that you wrote this post. I previously attended one of your events, and I remember being slightly confused due that prior knowledge.

Amy Lukavics said...

I loved this post a lot. Almost as much as I love KODY! <3 <3 <3

Jasmine Stairs said...

Hi Kody!

I am a writer-- working towards that, I should say. And I have really bad vision that's getting worse. And one of my absolute terrors is going legally blind. Cause of course then I couldn't write. So thank you for blowing that fear out of the water. And thank you for being awesome.

Leigh said...

AWESOME. In the inspired words of Robin's speech bubble, 'KA-POW! Take that!'

Kirsten Hubbard said...

Kody, I agree this post is perfect and also just beautifully written. I'm so proud of you for posting it.

Kody Keplinger said...

Jasmine - Why would you think you can't write if you go legally blind? It shouldn't affect your writing at all. Sure, you may need magnification on your computer, or even a speech program, but there are TONS of lgally blind and completely blind people (both born that way and who developed conditions later in life) who use computers and type every day. If you are really worried about that, I encourage you to talk to a doctor about visual aids so you can try to get used to them before they become totally necessary.

Kody Keplinger said...

Thank you so much everyone! <3

Chrissy said...

Thank you for this post. My mom's legally blind, so this really, really hit home with me. I feel like I understand her a little more now. And you're right--someone needs to talk about this, because no one really does.

I guess my mom was lucky in a way--she grew up in the Philippines and didn't realize she was blind for many many years. Everyone just thought she was just clumsy.

But what makes her amazing is that when she was ten years old she decided become a nurse and move to the US. And even though she was from a poor family on a tiny little island she went to college and moved to the States. She mostly escaped the "and on top of all that, she was blind!" thing because, like I said, most people didn't know. So I don't think it ever affected her as much, and I'm glad, because her achievements amazing, not ONLY because she's blind.


But I do have a question. My mom is really interested in learning to use a computer (especially the internet--we have a lot of extended family in the Philippines and she'd love to be able to email them). She's thinking about going to an institute for the blind which teaches computer skills, but are there any software programs that you could recommend that might help her? Anything that would help her navigate the computer. She has RP (retinitis pigmentosa) with some complications. She has tunnel vision and her remaining sight is really blurry in one of her eyes. We tried a magnifying program but I don't think she liked it much.

geceosan said...

it's always hard to come out, kody. so glad you did though.

i think you're an amazing author. full stop.

~missy

Jordyn said...

Good on you for taking control of your identity and how others see you. It SUCKS that the second a disability comes up it's the only thing people associate with you and I completely understand why you wanted to "hide" it for so long, but I think this blog post is an awesome way of addressing it.

Shari Green said...

Awesome post, Kody! Thank you so much for sharing this. You rock. :)

Kody Keplinger said...

Chrissy - I definitely think an institute would be great to help her. I attended one (not for computer help, but for an evaluation of my mobility skills prior to college) and they had lots of adults learning computer skills. As for programs, there are 3 options I suggest. One is ZoomText, which is the best magnification program for PCs. Its expensive, but incredibly useful. Second is JAQS, which is a screen reader, in case magnifiers just don't work for her. The other option - which I use - is just using a Mac. Mac's have really wonderful accessibility features - I can zoom in as much as I want by using CTRL+ 2 finger scroll up or down. I can also invert the colors, which makes it easier for me to read. Have her try that, as well (setting text to white letters on a black background) becasue it helps some people with contrast issues.

I hope that helps!

Lissa said...

Beethoven was one of the greatest composers ever. He was also deaf.
Kody, I always admired you. I admire people who achieve their dreams despite adversity and odds stacked against them. You're now number two on my list of heroes (after my mum, of course).

katiecoops said...

This is an awesome post. I have 20/475 vision uncorrected, but 20/20 corrected. I am so thankful for corrective lenses since I can barely even read without them. I'd have to hold the book about three inches from my face. It would be so hard to always see like I do without my glasses or contacts and I think it's awesome that you wrote a post about how it's a part of you, but not something that limits you. Also, I just have to say that getting published right after high school is incredible. I can't believe people can't focus on that and not your imperfect vision.

Alexa said...

You know what - I think your post is AMAZING. And also, it's very brave. Thank you for sharing :)

Ani Louise said...

Brave, wonderful post, Kody. I hope that it will keep the focus on you as a writer, which is where the focus should be. Thanks for explaining how you see the world. loved The Duff and will always think of you as a writer.

Kaitlin Ward said...

Great post, Kody. <3

jaclyndolamore said...

I don't know if you remember during our brief encounter at BEA awhile back that I told you I had a fantasy novel with a blind love interest. (Well, I should just say protagonist, really, because he has a POV in the book and plenty going on besides being the love interest...he's the heir to an organized crime business.)

The book hasn't been acquired yet, but even when I was having it critiqued I ran into weird comments sometimes. "How does Alfred use a computer if he's blind?" "Why would he say 'See you later?'"...like one always MUST use 'see' literally? I've been writing about Alfred for SO many years (along with writing books for publication I also just have an ongoing saga I write about for my own enjoyment and he's part of that) and I've read so many memoirs and books about blind people in trying to get him right that I've realized I no longer really know what your average person's conception of a blind person's life or abilities are...so I'm always a little shocked when I bump into it.

Anyway, this is the kind of crap that Alfred puts up with in his life sometimes, so I feel like I have a wee tiny inkling of it, although of course writing about it is more like fun (throwing challenges in character's path, YAY) and putting up with in real life would just be REALLY infuriating. That bit about them shrinking down the article because you wouldn't talk about your vision...oh dear lord. Sometimes you disappoint me, 21st century.

Hugs, from an almost-stranger, for a brave post.

Kate Erazo said...

You are really amazing! I love the way you write, and I admire you for that, I don´t care your disability. You are great for yourself and for be a magnific writer!
If somebody still doing dessable comments is because the people it's really stupid!
Sorry If the way I write is not the best, I'm from Colombia and I normally write in Spanish :S
A lot of Kisses = Muchos Besos
Que te vaya bien!

Steph @ The Caffeinated Reader said...

I understand how you feel in a way. I am not completely blind, but I was born with optic nerve hypoplasia. Because of this, I've been singled out my entire life. People, even my own father, underestimate me all the time because of my vision. I get questions like "how can you see your cell phone?" and "Can you see THIS or THIS or THIS". It can get quite irritating. I forget that I have a "disability" 90% of the time. It's only when people bring it up in a "wow, what's wrong with you way?" that I even remember that I'm not "normal". The ONLY thing I hate about my vision is not being able to drive, but that is manageable. The way people react to my vision causes more stress than the vision problems themselves.

Thanks for writing this post. I loved The DUFF :)

Linda said...

Great post, Kody. I knew you were legally blind from seeing your posts on AW, but I also knew what that entails. I think it's great that you're making people aware of what being legally blind really means and I understand why you'd be frustrated by people trying to define you by that. We all have something, you know? And it's like, you also have brown hair, but nobody is asking you how being a brunette affects your writing.

Anyway, great post :)

KT said...

So, so awesome :)

Miriam Forster said...

I know exactly what you mean. I have a young nephew that was recently diagnosed with Asperger syndrome. He's a math genius and an amazing kid and I hurt because I know that getting him the help he needs will mean that for the rest of his life he'll be put in the "disabled/mental issues" box.

You are brave and awesome. And getting published right out of high school is WAY more impressive than finding your way around campus. :)

Emily Hainsworth said...

Kody, I just wanted to send big *HUGS* and huge props for posting this. You are a remarkable girl for so many reasons, and certainly one of the most memorable, fun people I met in NYC. Blindness is certainly not what I remember you for. More like kick-ass author, how about that? :)

Nikki said...

Oh Kody, this is sad that you even have to write this. I mean, bravo to you - but this should NEVER take away from the fact that you're an amazing writer. I had no idea you were blind until I met you that night at dinner at BEA ... and it certainly didn't make me go "wow, how did she write a book?" or detract from what I knew about you.

But you have a great point - and that's that people with disabilities are people. I can't smell (which of all the 5 senses is probably the best to lack) but I never ever talk about it. Because you're right - it doesn't make me less of a person. It doesn't give me less of an ability to talk about smells in my books either!

The Blogger Girlz said...

Thank you so much for this post, Kody! It makes me remember that I'm not alone. I have Cerebral Palsy but I'm also a YA writer and I would hate for an interview that supposed to be about me and my future published book to instead become an interview about me and my disability, because like you said, the fact that your blind is only ONE PART of your identity, not ALL of it! Thank you so much for reminding me of that! :)
~Ella

Lisa said...

Hi:
I am a blind musician who has dealt with the same issues for my whole life. In high school, my band mates were excited because the local newspaper wanted to do a story on us. I tried to explain to them that they were only interested in the so-called "amazing" blind girl, but they didn't listen. They were almost mad at me when the article came out and it was all about the blind girl who played music. I was embarrassed for myself and disappointed in the guys I played with and with society in general. I am almost 42-years-old and I can say things have gotten quite a bit better. I'm not sure if that is because people are more aware of the abilities of all different types of people or simply because people just don't notice or care about each other as much anymore. Either way, people don't seem to marvel at my ability to breathe as much as they used to, and for that I am greatful. Keep up the great work and ignore the idiots; they do mean well.
Lisa

Meg said...

Came over from Cleolinda's tumblr. I have Crohn's disease and rheumatoid arthritis, and for years I hated talking about it or referring to myself as "disabled" because I didn't want pity.

Kudos on your bravery and eloquence. You rock.

Michael Northrop said...

This is a wonderful post, Kody. I remember when we had our impromptu disability discussion at Books of Wonder: all the things I didn't express especially well then you expressed beautifully here. I did the same thing and "confessed" to being dyslexic on my blog, and it really does feel good to be more open about it.

Chelsey said...

Kody,

Honestly? I wouldn't if I hadn't been there. I kNOW how scary it can be to go into an environment not being able to see properly, and I give you mad props for being cool about it.

The Girl in the Afternoon said...

This is a great post, Kody. I work with disability theory in an academic setting, and one of the biggest issues that students have is getting past the (forgive the potentially offensive term) "supercrip" narrative - that people with disabilities are inspirational simply for living their lives, for doing totally normal things. Or, in your case, doing an incredibly amazing thing (getting published straight out of high school!) but having that experience be eclipsed simply by the OMG UNBELIEVABLE story of living with a disability.

I'll definitely be sharing this post. It lays things out in such a clear, elegant way.

E.Maree said...

Amazing post, Kody.

A.J. Mullarky said...

I want to say "you go girlfriend" but I can't pull it off. The sentiment is there.

Sarah Rees Brennan said...

This is a truly great post.

I'm close on being legally blind myself--took a test and shaved by, can vision-correct to an extent with one eye, the other one is a hundred per cent blind, no depth perception, keep trying with that driving thing but so far to no avail--It's not at all the same thing, of course, but it did mean that certain things you say here REALLY resonated with me.

I think it's great of you to tell people now, and also great of you not to have let them define you by it.

Riley Redgate said...

This is an absolutely brilliant post. People's omnipresent desire to stick other people into boxes is a constant amazement to me.

I used to be somewhat of a child music prodigy, but I hated it a little, because I didn't want to be good for a kid, I wanted to be good period. I didn't want my age to be a factor in competitions, because age and musical skill are about as related as ... oh, I don't know, writing and vision.

A friend of mine is gay, and he hasn't come out yet. He's not scared of it; he's just annoyed by the fact that people in our town would put that first - would tag him as 'A Gay Kid' - when in the grand scheme of his personality, it's completely inconsequential.

There are endless examples. But I don't ever want people to make concessions for me; I don't want to be defined by aspects of me I find irrelevant but society has somehow deemed Big And Important.

You go, Kody - this post is brilliant and brave. And this sentiment IS Big And Important.

Kristin Halbrook said...

When I read about the going to a concert in a city you'd never been in before with a direction-challenged friend, I totally assumed you were talking about me, lol. :D Then I reread the three years ago part. And really, I'm not direction-challenged. Anyway, I digress.

You're a great talent, Kody. <3

Bonnie Rae said...

Thanks for sharing! Sometimes being proud of who we are is harder than anything else. You are awesome and I admire you! I have OCD really bad and just finally started seeking treatment, I know it is just a disability of the mind, but embracing my reality was harder than hiding it! You are an inspiration, Bravo!

ChickLitGirl said...

First of all, I LOVED the Duff, and I really GOT Bianca. Then I searched you up and found you were PUBLISHED OUTA HS and died, because that is THE most awesome thing EVER.
So, yeah you're beyond awesome. Wish I could be that way.

About your disability, what Im confused about is, if you cant distinguish between colors, then, wont expressions and other things also be hard to judge?
Wasnt it difficult/challenging to write your 2 awesome books, because books require a LOT of detail right? Every scene and everything, I mean, did you draw on personal life experiences or did you just use your imagination?
Because, thats one thing I think about while writing... is experience really that important, or can your imagination suffice?. [obv, that thought is a lot more deeper that my question, but theyr sorta related].

Anyway, you inspire me.

The Story Queen said...

Still the same amazing Kody :) Thanks for the fantastic post.

Sonia

Kody Keplinger said...

ChickLitGirl - You have to understand that I DO have some vision, and even though it's not as good as yours or other people's, I know how to use. That's the the thing - you can't imagine how I see and then think you've been in that position because I dont' know what its like to see any other way. To me, I see fine, because I've never had the experience of seeing the way someone else would.

Because of this, I know how to USE what vision I have. I can see expressions on faces. Maybe not as clearly as you can, but its clear to me. Between that and the fact that I am really well read and know how others have described things.

Don't get me wrong, I'm not a detail oriented writer. My strong suit is emotion and dialogue, and occassionally my editor has to ask me "What dos he look like? What is he wearing?" and I'll add that in. But I do know what things look like - at least how they look to me. And thus far, that's been enough.

AS to imagination - I think you can write beyond experience. I have and do all the time, not with visual things, but with emotional things. I don't know what it's like to lose a parent the way a character in one of my books does, but I can imagine it to some degree.

seaheidi said...

Beautiful brave post, just like you.

Thank you for not adding: I know my way around NYC WAAAAAAAAY better than some of my fully-sighted friends. *koff Heidi koff*

<3

melannie (: said...

Wow, I had no idea!


To me you were just an author (a pretty great one, I might add),
but now, you're the author that got published right after high school!!! incredible!

The Romance Bookie said...

Wow Kody, thank you for sharing. I can understand how difficult it must have to write that.

But let me just say, if people don't see how talented of a writer, because they only see as having a disability, then SCREW THEM! That's absolutely ridiculous! Since when is the writing world a world about appearance??! The writing world is supposed to be a world of caring about what people have to say, the stories they imagine, and showing feelings in your writing.

You Kody, inspire me, not because you wrote this post, but because you are an absolute talented writer, who by the way, I've added your signature to my wall right between Simone Elkeles and Nicholas Sparks and Meg Cabot :), thank you again for that. You inspire me to follow my dreams, even if other may think I'm too "young". I'm only a couple about two months older than you, and since I read "The DUFF", I've actually come up with a few stories ideas of my own. And you know why that is...you and all of the authors that have inspired me, because I love yours and all of their books.

Thank you Kody! Always remember what Eleanor Roosevelt said, "No one can make you feel inferior without your consent."

:)

Casey (The Bookish Type) said...

I will admit that when I met you at TAC, I was surprised to discover you are blind. However, since then I have totally forgotten about it. Not because I've forgotten about YOU, but because there are so many AMAZING, BRILLIANT, BEAUTIFUL things about you AND your books that occur to me first. You are truly an inspiration to me (no joke, I added you to my "people who inspire me" list on Facebook like an hour before I saw this post) because you are young and talented and fearless. You take important issues that our society is scared to deal with by the horns, and you do it with grace and intelligence. What you're doing -- both with your writing and with your platform as an author -- is awe-inspiring. This post is one example among many.

You keep on being your awesome self.

Jamie said...

Thank you for writing this post. As a family member of someone with a disability, I understand how frustrating it can be when someone is defined by his/her difference. To me it's as important as hair or eye color - certainly a part of that person, but not the only and most definitely not the most important part. In fact, in the grand scheme of things, it's pretty insignificant.

On another note, I met you at TAC and realized then you were vision impaired. Has it made a difference in my view of you as a person or a writer? Absolutely not. It's not anyone's business, and your choice to share it with the world is very brave and I'm sure very empowering to other vision-impaired artists.

Jen said...

Wow...I had no idea you were published right out of High School! That is so.freakin.awesome!

BTW, I seriously thought you said you were legally blonde... (no.joke.) & I was thinking, 1) Blonde? But her hair is brown in the picture & 2) Why does she think we care about the color of her hair? (my brain likes to switch words on me sometimes.)

But when I read it correctly I thought, Huh...how small of people to focus on that when they should be focusing on how fun your books are to read and how young you were when you were published!

You Rock!

Miss Lauren said...

I know this must've been really, really hard to write. I have always been a pity party hater myself. Except when it comes to my boyfriend.. he says I whine a lot. Haha. Anyways, I found out that I had Generalized Anxiety Disorder around the time that I started college. It's hard for me to talk about because people react one of two ways. One: OMG are you ok? Do you like freak about about everything? Or... Two: That's all a bunch of bull and it's in your head. Well my thought is always.. One: It's none of your business. Haha. I choose my words wisely and only my close friends and family know. Sure, I've been through hardships and I still work through things almost daily, but that just it.. I am working through it. It is a part of my life and I don't want to be defined as "that girl that freaks out" or "that girl that always has something wrong with her". Sometimes its hard, but I make it easier by well, just not telling anyone unless it's necessary.

Thanks for your post. I'm glad to have met you on twitter and hopefully we can meet one time when you come home! :)

Wendy said...

Hey Kody,

You wrote:
I did it because I didn’t want it to be part of my identity. I am a person. I am writer. I am a girl. I am a Southerner. I am a music lover. Way, way, way down that list you might see “I am blind.” Of course it is a part of me, but it isn’t me.

I was born with something called Congenital Nystagmus. Not only am I legally blind, but my eyes move back and forth with a slight motion all the time. I do understand your desire to lead a normal life without a spotlight being put on one aspect of your being.

As a side note, I remember seeing you at BEA last year and how your editor read a passage from your book rather than you. You had told the audience it was because you weren't great at reading in public. It's interesting to now know the real reason and to think back to that day from a different perspective.

I have to say though, that I respectfully disagree with your impairment not being part of your identity. What you haven't been able to see and how your intuition and instincts developed because of it absolutely shape who you are as a person and a writer.

And don't you think that you also have an advantage when it comes to writing about, and having compassion for, people whose external (and internal) imperfections impact their lives? Isn't that part of your identity?

You may not want people to dwell on your eyesight, but I hope one day your frustration will diminish and you will be open. People are yearning for others to step up and show that, no matter what limitations you are dealing with, you still accomplish anything.

An example: When I was a teenager, I naively thought I'd be able to get my driver's license. I was devastated when I found out I couldn't. Now, here I am wanting to write YA and thinking, how can I write scenes in which a character drives when I have no inkling as to what that is like? But I think back to The DUFF. In that book, if I remember correctly, your main character drove. Now that I know you didn't let not driving stop you from writing about it, I'm inspired. Thank you for that.

Kody Keplinger said...

Wendy - funnily enough, I actually have Nystagmus as well. It's a symptom of my overal disorder (which is too hard for me to spell, but its initials are LCA).

As to what you said - yes, perhaps what I can and can't see did shape me in some ways, but doesn't every moment of your early life shape you in some way? My parents got divorced when I was 2, and I know that shaped part of who I am, but I wouldn't say that being the child of divorce is "part of my identity." And no one would ever introduce me as "Kody Keplinger, that writer whose parents got divorced when she was a little kid."

What I'm saying isn't that my disability didn't shape me - as I said its PART of me - but that it isn't who I am. It does not define me. You couldn't just say I was "blind" and know instantly what kind of person I am. But if you say I am a writer, I am a liberal, I am a 20-year-old - these things give you a sense of who I am, where my blindness does not.

I do know blind people who feel differently - who are "blind people" and "proud." I don't see myself as blind person. I see myself as a PERSON who is, as a sidenote, way down the list, blind. And I'm not proud to be blind, but I accept it. Just as someone who is lactose intolerant isn't proud of it, but deals with it.

It's a difference of perspective, I guess. But I think, in some ways, we choose who we want to be. The person I want to be is not a blind person. The person I want to be is a writer, a liberal, a 20 year old. Yes, I am blind, but in my world, that doesn't factor into the equation.

Wendy said...

It's a difference of perspective, I guess. But I think, in some ways, we choose who we want to be.

That's a really good point. The reality is, who we want to be will change throughout our lives. It's cool that you have a definitive idea of who you want to be right now.

I didn't know you had Nystagmus. Aye yi yi... During last year's BEA I was too nervous to speak to you and congratulate you on The Duff because I feel self-conscious about my eyes.

At this year's BEA, you signed a copy of Shut Out for me. I stood across the table from you, but because of my limited vision, never even noticed your eyes. (I was also too exhausted from standing in so many authograph lines to pay attention!).

This may sound weird, but I've never been in the presence of someone who has Nystagmus (that I know of!). Selfishly speaking, a part of me wishes I had known at the time. I understand you don't want to be known as the blind chick, but there's just something a bit comforting knowing there is someone out there who can relate to the Nystagmus thing.

I hope your blog post was helpful to you and that you're now able to get back to focusing on writing fiction!

Kody Keplinger said...

Wendy - I wouldn't be selfish conscious about your eyes. Honestly? I've fooled SEVERAL people about my impairment (if i don't have my cane, most people can't tell i'm blind because i don't "carry myself" like a blind person). When they notice my eyes, they usually just assume I'm doing some strange trick with my eyes. LOL

No, I'm not kidding. I've been asked numerous times, "How do you do that wiggling thing with your eyes?"

And then there are those people who just don't notice at all, and then when yo point it out yourself, they're like "Oh yeah! I see it now!"

Wendy said...

When they notice my eyes, they usually just assume I'm doing some strange trick with my eyes. LOL

Hahahahah! OMG! I have had the same experience!

I always get a kick out of people asking me if I am aware my eyes move and also those who think I'm on drugs! Hahahahah!

I don't mean to clog up your comments with Nystagmus stuff. This will be the last one, I promise.

I do feel self-conscious mostly because I don't want anyone to feel ill at ease in my presence. The eye movement thing isn't exactly something people see every day. Often times, abnormal things make people uncomfortable.

But like you wrote, my best friend has told me he never notices my eyes unless I am extremely nervous or angry (both emotions make the movement speed up). Putting emotion aside, logically, you're probably right-most people just don't notice.

It's a weird thing. I think of my limited vision as a blessing in so many ways, but yet I have, to a large degree, hidden myself away because of the Nystagmus. Like you, I know how to function with the limited vision I have and can figure out how to get around just fine. It's just fully embracing the eye movement thing that has tripped me up.

Come to think of it, I really do want to thank you for being so fearless and having a strong sense of self. I think of all the success you have created by not succumbing to self-doubt and am grateful for the evidence that it can be done.

Marieke said...

Thank you so much for this post. I read it yesterday, but never got around to replying.

As someone who deals with disability, I sincerely dislike it when people pity me. As you've pointed out - when you're born that way, it doesn't seem so bad. I want to see a world where we're all people first and disabilities are merely a part of our much broader experiences.

Although I do try to be open and proud. Exactly because normal shouldn't be wonderful and amazing, it should just be normal :)

Penny said...

Kody,

I would really like to thank you for sharing such a personal blog. My 7 year old daughter became blind last year. This past year there have been the people who looked at my daughter with pity and sadness. There is also those that see everything she does a some great feat. As if being blind makes her helpless. She just wants to be a be a kid. She didn't get less daring because she lost a lot of her vision. Her gym teacher was really surprised last year when he was told that she was legally blind. She is fearless and always has been that way.

A big concern of mine has been my daughter becoming ashamed of being blind. She likes to hide her cane. She hates it when a big deal is made of her blindness. Your blog helped me realize that perhaps she does that not because she is ashamed of herself or her blindness but how other people see her. She doesn't want people to see the blindness first. She want them to see HER first.

Ramsey Hootman said...

SUPER post, Kody. I remember critting one of your first queries on AW (this is JoNightshade) and how you were pretty matter-of-fact about your vision back then. It wasn't a big deal. It makes me really sad to learn that you've had to deal with this kind of idiotic treatment from the media and others. I really don't see how your vision has anything to do with your books.

I hope when you encounter situations like this in the future, you will point people to this post for an explanation. It's really powerful and I think it will help these clueless people understand where you're coming from.

Kody Keplinger said...

Penny - I'm sorry to hear your daughter lost her vision. I know it is harder to lose somthing you had than to be born blind. But I am glad it happend when she was young and not older, because from hat I've seenfrom other friends with visual issues, its harder to deal with vision loss as an adult than as a kid.

I COMPLETELY understand why she hides her cane. I always use mine when I need it, but once I don't need it, I hide it, too. I can honestly say that there is a massive difference in my relationship with people who found out I was blind AFTER getting to know me and people who knew I was blind before knowing who I was as a person.

People who get to know me first and find out I'm blind later often FORGET I'm blind, which is what I prefer. I'd rather have to remind them, "Hey, its dark. Can you give me a hand?" than have them constnatly asking, "Do you need help? Are you okay? Can you see?"

Which is what happens with people who learn about my vision first - people who see the cane before they see ME. They constantly ask if I need help, even when I tell them I don't. It never ends. They are over attentive and it gets annoying and, to some extent, offensive.

One thing you can do to help your daughter is to teach her how to be independent so no one ever has a reason to worry about her. My mother always made me do all the things other kids did - yes, I had some visual aids if necessary, but she never took pity on me or did things FOR me. I know it was hard on her to watch me struggle, but it made me a stronger person. And a braver one. I moved out of my house at 18, I went to college in another state, and I now live in NYC, on my own, taking care of myself.

Blind people can live totally normal lives. Just teach your daughter to be independent and strong, and hopefully people will learn to see her and not her blindness.

Anonymous said...

What a wonderful post

Derrick said...

I go everywhere with my white cane and lots of people open doors for me and offer to help me across the street. I try to see kindness instead of getting irritated, though I must admit I almost laughed out loud when a woman watched me go up a flight of stairs and open a door by myself. She said "You are awesome!" I was thinking, "its a door. Everybody opens one every day." I'm in my first year of legal blindness so I'm still feeling out identity separation and all that. Its been an interesting ride so far. I'm trying to help others understand what my sight is like here-www.breakthewhitecane.org

Someday people who know us won't think to describe us as blind any more than they'd care to mention our shoe size or hairstyle.

Deborah said...

Cody, I have struggled with whether or how to identify myself as blind throughout my writing career. For a long time I refused to mention it in the "About the Author" section of my books unless the book had something to do with blindness specifically; since blindness wasn't relevant to a book on the Japanese American internment or a novel about a family in the California Gold Rush, why bring it up at all? However, eventually I decided that it is important to show that blind people are out here living our lives, pursuing our careers, and making our contributions in the world. If we don't reveal the fact that we're blind, an opportunity is lost; and yet, as you are well aware, there is a price to pay for openness.

I would love to be in touch. Please write to me at dkent5817@att.net if you'd like to exchange ideas.

NN said...

Nicely handled.

Also, a bit of serendipity - as far of my job, I get Google alerts when blogs/news stories/websites use words like "disability," "mental health," etc. Some of the results are, well, squick-inducing; this one, on the other hand, introduced me to a writer whose prose style and attitude I like. So apparently, there's an unforeseen upside to outing yourself on your blog: you've just picked up another reader, as soon as I can get to the bookstore!

Buddy Brannan said...

Good on ya Kody! Sorry, I haven't read your books. Yet. But, yeah, what everyone else has said. I'm a blind person myself, and of course, I've met the same frustrations. Good for you for facing them head on. Also, great post, and we're all 100% in your corner. Thanks for expressing this view so wonderfully. I'm definitely A) bookmarking this page, and B) going out to find your books. Keep up the excellent work :)

Melodie Wright said...

I echo others' opinions -I hope someday you'll write about this. Your eyesight doesn't define you AT ALL, but it does contribute to who you are, your bright shining spirit, your toughness and optimism. :)

GABY said...

Wow! Let me just tell you, I never knew. Only discovered it while reading your post. But I always thought you were cool, only because you are a writer hehe :P

I understand the way you feel about people seeing you first as blind, then as you. I have a large scar on my arm, from an accident last year. I'm still adapting to people always looking at my arm first, and then me. Some people even told me, as an "advice", that I should wear long sleeved shirts. Excuse me? It's my scar, and I should be proud of it, right?

Keep writing and having fun!

Kody Keplinger said...

Thank you so much for the comments, everyone!

Melodie - I'm going to disagree with you there. I don't think it contributes to my "bright spirit" necessarily. I think I'd be just as bright a spirit if I were sighted. Why would being blind change that part of me? And by the same toen there are many blind people who aren't optimistic at all.

I think my vision has changed me in some ways - my effort to compensate for it has made me a harder worker. But aside from a few small things it has NOT changed who I am. I find it hard to believe I'd be a different person inside if I were sighted, mostly because I was BORN blind. If I'd been born sighted, it would be the same situation 0 I wouldn't KNOW any better either way. It's not like I lost something and i had that change me.

By the same token, as I said in an earlier comment, I highly doubt I will ever write about blindness. There are two reasons for this - a.) I don't know what its LIKE to be sighted, so how could I ever describe something that I experience every day? How I see is NORMAL to me, so how do I write about it? b.) I simply don't WANT to write about it. I don't even think of myself as blind. I forget about it usually (like another commenter said she does). So I'd rather not write about it. It would me rather depressed, honestly, as a constant reminder than I'm different when I usually forget that myself.

tamarapaulin said...

Thank you for sharing. This is an issue I wouldn't have thought as much about if I hadn't read your article.

I am reminded of another blog post, where a woman wanted to be known as a sci-fi writer, and not a "black female sci-fi writer."

I guess the PR people / journalists are just trying to do their job by pulling out each author's unique qualities, but it sucks to be defined by others, however well-meaning they are.

We're writers. We'll define ourselves in our own words, thankuverymuch. :-)

Julianna Helms said...

I have three things to say:

1) I did not know about your disability before I read your books.
2) I love your books.
3) You are braver than I will ever be.
4) I lied. I have more than three things to say.
5) You're awesome.

Caitlin R. O'Connell said...

Have I mentioned lately that you're awesome, Kody? 'Cause you are. This must have taken a lot of nerve to write, and you really nailed it. *high fives*

Paige said...

No questions, just a kudos. Bold, unapologetic and what we need more of, because there are far too many people who think there is 'something wrong' with differences.
Keep it up!

June G said...

I learned you were legally blind two years ago during the SCBWI conference in NY. Your editor mentioned it. She said it with such a sense of pride. She also spoke of what their expectation is for you in terms of how often you release a book. I've never mentioned it online because I didn't know if you were comfortable with the info being public. I'm glad I waited and I'm happy that you're at a point where you can talk about it openly. Oh, by the way, I was in Barnes & Noble yesterday--in the YA section, of course. A couple of girls were struggling to decide what to buy. I saw them at the check-out counter with Shut Out!

Chel said...

You are exceptionally awesome, Kody. :)

Colleen said...

Awesome post Kody.

:) Colleen Clayton

Kristin Walters said...

I saw an ad (I guess) in 17 magazine about your latest book and I went to look it up. It is a teenage girl book and that is the majority of what I read. But when I found your blog and read the first entry I saw it almost brought me to tears. Not because I pity you but because you being a published author have a bigger voice in the world than I do. I am a 17 year old senior nobody to the world but what really makes me "invisible" as a person is the fact I can't walk. I'm permanently doomed to a wheelchair. And I've always thought people looked through me as a person. Having a disability makes you no less of a person. No one ever seems to understand that to me. And I find it inspiring you can write books even when everyone else is more fascinated by the fact you can't see. You are a person as am I and I never will understand how people don't "get" that. It is a fact not an opinion. Last year in my yearbook I had my first ever article posted. It might have been about how un-handicap accessible my school is but it was something. I give props for making me feel like I can say screw you (hypothetically) to all the people who look down (literally) to me. And one more thing? Thank you for making that much of a difference in the dis(perfectly)abled community :-)

Daisy Whitney said...

All I have to say is I love your books!

Laura Lascarso said...

This post was honest, thoughtful and inspiring just like your novels. Talent and ambition will take you far, regardless of circumstance.

sherylbooks said...

What struck me about your writing (and I've only read your fist novel) was how insightful and emotionally true and powerful it was. When I discovered how young you were, I was even more impressive...As far as writing is concerned, your vision is 20/20. Best, Sheryl

J K Brennan said...

i just stumbled across this post and now I'm so curious about your writing. I'm a totally blind writer myself and I recently finished national novel writing month as a winner. um, yeah, I can type. and use a computer. and record and produce my own music, and even cook my own food. Hehe. Imagine the questions... ugh. I don't get angry much anymore over ignorance. It amazes me though when people start a question with "but how can you...." sigh! but in a way I have embraced it. there is a lot of blind jokes in my home, mostly provided by me, and i think it's because for me "blind" does not mean "disabled" Because truth be known, I'm very F-ing capable. and so are you. thank you for sharing.

Anonymous said...

Hi Kody,

My name is Emily and I just have one thing to say......wow you are such an inspiration I don't even know where to begin. You see, I am also legally blind and have 20/200 in one eye and 20/400 in the other. I understand completely what you are saying. In my life, I have few friends because of the same reason. Many people judge me based on my disability though they don't even know me. And the funny thing is, I am just like any other person and can do whatever a fully sighted person can do, just with more obstacles to overcome. I hate when people judge me based on only that (and believe me it happens a lot).

Another way you inspired me is more of a coincidence. I also have such a passion for writing and am a sophomore in high school. My new year resolution is actually to publish the book I am currently writing. And I guess, one of the reasons I am doubtful, is I'm afraid that once publishing companies know of my disability, they will reject me and treat me differently because of it. But your blog helped a lot so I have to thank you for it. Hopefully one day I will be published and the world will know of my disability and treat me no different.
And I will look back on this and thank God that I found this one blog that really did change my life and inspire me. The world really needs more people like you.

Anonymous said...

Hi Kody, just wanted to say thank you for this post, and that I'm going to be looking for your book with the intention of buying it. Because I really like the way you put things, because wow, a novel straight out of high school, and because, damn, that's a great title.

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Holly said...

Ok, so here is some irony. I'm blind and I really like your books. I think I read the Duff about this time last year, and I only today realised you're blind too.

Seriously you're awesome not because you're blind and you write books but just because you get on with it, and your writing isn't depressing crap about "life in darkness" or something, you know those autobiography's that make you want to throw up?? So thanks for writing really cool books, you've restored my faith in blind writers :)

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Patrice Caldwell said...

This is beautiful. Thank you for speaking up even though I know it was hard.

I'm not blind but I am black and queer, so I couldn't help but seeing and drawing similarities. it's the most frustrating thing when all your accomplishments and worth are reduced to how amazing it is that a young black queer girl was able to do...

A lot of time it's because people think by being black and queer you must've had this really hard life. Which for me, isn't true. I've had struggles but I've also struggled with grades and so forth. To me it's a part of my life but like you said, it isn't my life. And on the list of things I consider myself, yes they're important to me but I don't want to be defined by them. I'm a writer, blogger, I like sports, love baking, etc...Yet people continue to bring it up as what must be the defining features of my life. I think that's why I don't talk about my sexuality as much, because it's the one thing I can hide. I'm not ashamed of it, but my blackness is already out there & talked about 24/7. When I become a published author, I really want to be there as an inspiration for teens but not because I'm black and queer, even though I get how that could be important, but as a young, successful writer, as someone who wasn't afraid to follow her dreams even though she could've taken a different, possibly easier path.

Thank you!

andrea Forsythe said...

Hi Kody, I happened upon your post when I was doing research as I sat 4 inches from my computer screen wearing my shaded "indoor" glasses. I am also considered legally blind. My vision best corrected acuity is 20/200. I am near sighted, totally colorblind, and very light sensitive. A genetic disorder called Rod Monochromacy. Your post very much mirrored my own thoughts. People expressing their praise at my "awesomeness" for being able to wait tables "while blind" can be quite embarrassing for me. Like you, I was born with my disorder. I've always seen this way and it will never change. I count myself so much more fortunate because of that. For me, it is not a disability; it's life. One thing I try to remember though is that all of us can be uncomfortable with people different than us. I feel that most people simply do not know what to say. The worst is when people innocently ask why I'm wearing sunglasses inside. When I tell them I am visually impaired, they apologize like they hurt my feelings. I'm not embarrassed to be blind, I don't even think of it because this is all I know. Many times I just smile and say I just like my sunglasses so they don't feel bad for me. Thanks for sharing Kody.

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Banned complain !! Complaining only causes life and mind become more severe. Enjoy the rhythm of the problems faced. No matter ga life, not a problem not learn, so enjoy it :)

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