Cristina's Braille Tech...

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Let's get together and buy our lovely Cristina Hartmann a Refreshable Braille Reader!
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Christine Langtree
Community
Townsville
Australia
1 Team Member

Hi, everybody. I'm Christine Langtree

 

Last week, I was moved by a blog post written by a friend on a web community we both belong to: quora.com.  In it, she confessed she has been hiding the fact that she is going blind from us - her fellow Quorans - and requesting that we forgive her. 

 

Forgive her? Well. Now. That's just crazy talk. 

 

You can read the complete text of her blog post at the bottom of this post. 

 

Anyhow, in the comments after her post, she shared that she will soon need something called a refreshable braille reader in order to continue to participate on the net in general, and on Quora in particular.

 

So many of us wanted to help that I thought a crowdfunding campaign would be a great way for people who aren't sure what they can do to take some action. 

 

$5000 will buy Cristina a medium range braille reader from what my research tells me. Cristina herself was looking at one for about $3000 which is a cheapie since she is a writer and as everyone knows, they are all starving except for Stephen King and J K Rowling.

 

Personally, I think she deserves the best and we should be looking at trying to raise ten grand to help her along - but let's shoot for the centre of the target; if we go over it, fantastic. She can get herself a new pair of shoes as well.

 

Give what you can - if you can't give, then promote, promote, promote us!

 

Of course it wouldn't be crowdfunding if you didn't get something fun in return, so have a look through our perks and see what you like!

 

I just really think that if the people of INdiegogo can raise 700 grand for Karen, a bullied bus monitor to have a holiday, we can raise a measley 5 grand, to make sure Cristina Hartmann can continue to make the great contribution to our community and the web in general that she has thus far.

 

I think it's also important to regard this as an opportunity to raise awareness of the need for accessibility to the net for those with disabilities.  If anyone has any information that want to share on this subject, let me know and I'll post it as an update here. 

 

Below is the complete text of Cristina's post of Sunday, 24th March and a link to the original post on Quora. 

 

http://www.quora.com/Cristina-Hartmann/Posts/A-Confession-of-Sorts 

 

A Confession of Sorts

Cristina Hartmann

 


Many of you know that I was born profoundly deaf and received a cochlear implant when I was six.

What many of you don't know is that in the same year, I was diagnosed with Usher Syndrome, which is hearing loss coupled with retinitis pigmentosa (RP)(.[1] It's the leading cause of deafblindness. (Insert Helen Keller jokes here.)

Yep. That means that I'm losing my sight in addition to having a major hearing loss.

Why the last year and half was the worst time in my life.

Two years ago, my RP wasn't terrible. I had some peripheral vision losses, but I compensated quite well. It was more of an annoyance than an impairment. As strange as it may sound, I didn't think about it much. 

Then about a year and half ago, I developed a blurriness and distortion in my central vision. I went to various doctors and none of them could explain it. They had never seen anything like it before. I was so afraid that it was my RP taking a turn for the worse.

A top specialist in Boston confirmed my fears. The damage was irreversible and related to my RP, albeit an unusual development, but not unheard of. There was no going back to my old life. 

The worst thing about it was that it happened suddenly and unexpectedly. 

Over the course of eight months, my central vision went from 20/40 to 20/200, uncorrectable with lenses. I can't do a lot of things that I could do even a year   ago. I can't read regular print. I can't see distance almost at all. All straight lines look wavy to me. I had to give up watching movies because I can't read the captions fast enough.

Usher Syndrome is very unpredictable. Some people have good central vision well into their fifties. Others lose nearly all of their hearing and sight by thirty. Perhaps I was foolish and naive, but I was always convinced that I'd be one of the luckier ones, that I'd keep my sight well into my forties. I was wrong.

How does it feel to be losing your sight as a deaf person?

It's really, really complicated and devastating, especially as a deaf person. It's taking away something that you depend on the most in your every day life. 

On one hand, it requires a tremendous change to your lifestyle. Now that I can't read regular print or navigate the world as easily, I had to put on my big girl pants and adapt. I'm learning braille and how to use a white cane. I interact with objects differently now. Since my vision is unreliable, touch has become my most dependable sense. That, of course, means that my world is shrinking into the space that I can reach.

On the other hand, it also changes your identity, inside and outside. People look at and treat you differently when you have a white cane. To throw the hearing impairment into the mix only makes things worse. People don't think that I can do anything anymore, even think. It doesn't seem to matter what I've done before in life. To many people, I'm at best, a pity case, and at worst, a drain on society. Quite frankly, it's a depressing feeling.

Perceptions aside, I can feel myself changing, both for the better and for the worse. Now, I'm more attuned to the sight that I still have and noticing more. I may not see much, but I treasure what I do see. In many ways, I'm more sanguine about a lot of things because when your choices dwindle down to single digits, you learn how to stop bitching and moaning about the little things (well, mostly). 

The changes, however, aren't all positive. As my world recedes into touches, smells and tastes, I can feel myself withdrawing. It's becoming harder and harder for me to go out and socialize with people who don't know what to do with me. I'm already a natural introvert and I'm truly scared that it'll turn me into a hermit. Despite (and perhaps because of it) my introversion, I love interacting with people.

Why am I telling you this?

On the Internet, I could pretend to be sighted and hearing, so why am I not doing that? It'd be easier in many ways.

I'm not doing this for pity. In fact, I'd rather you not share your pity. I don't need or want it. 

I've kept my condition a secret for a long time. I saw it as a weakness, something that I needed to hide. In a demented way, I wanted to defeat, beat it somehow.
 
I'm sick of the shame and secrecy. Only now do I realize that it's not something that I need to beat (or is even possible). It just is. It's a part of me now, like it or not. 

I promised myself a long time ago that when it happened, I would deal with it. I feel like the best way for me to come to terms with it completely and wholly (I'm almost there, I think) is to be as open and honest about it as possible.

I'm hoping that by being open and honest, I can reconnect with the world and prevent myself from closing wholly into myself. If I can give others insight into my experiences, it'd be reward enough for this admittedly painful time in my life.

So, if you have any questions, consider me open for business (unfortunately, I can't provide 24-hour service). 

P.S. From the bottom of my heart, I apologize for not telling you sooner. I felt terrible about it, deceptive, even.

 

 

 

 

$7,748USD
raised by 105 people in 1 month
155% funded
0 time left
$5,000 USD goal
Flexible Funding This campaign has ended and will receive all funds raised.
Campaign Closed
This campaign ended on May 9, 2013
Select a Perk
  • $5USD
    The Follow Perk

    I will follow you for a period of not less than 1 month.

    7 out of 300 claimed

  • $15USD
    The Follow x 5 Perk

    I will gather 5 other individuals to follow you as well!

    10 out of 100 claimed

  • $50USD
    The Credit Perk

    I'll give you 5000 Quora credits!

    8 out of 30 claimed

  • $100USD
    The Your Very Own Poem Perk

    Since Cristina and I are both writers, between the two of us, we'll compose a tribute in verse to your cleverness the likes of which Quora has never before seen!

    8 out of 10 claimed

    Estimated delivery: May 2013
  • $1,000USD
    The You're A Legend Perk

    There's really nothing we have to give you that's worth a thousand bucks in material terms - but you'll have the undying thanks of a grateful writer or two and the knowledge that you're an amazingly generous soul. But if you like, we'll write you a poem as well.

    3 claimed

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