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My Life is Not a Tragedy!

Why do medical articles always have to portray blindness as some kind of epic, life ending tragedy? Why do they have to scare parents into thinking that if their child loses vision, it is the end for them and their life will be filled with woe and they'll never amount to anything? I'm not really opposed to "Prevent Blindness" research, (ok, well I am a little, but that isn't what this rant is about), but I do wish they would at least acknowledge that there are lots of blind people leading completely full and productive lives.

Here's some irony for you: I just tried to leave an opinion on a medical website with this type of article, and their captcha wasn't accessible. I EMailed the tech staff a cranky EMail, and pasted the text of my opinion in there for them to post. Granted, some of this inner rage is probably fueled by my headache, but I'm sick and tired of eye doctors pushing parents to try and "save" what little sight a child has, even if using that vision is painful for the child. Learning alternative techniques young will help them be more successful in the future, not to mention cause less pain and eye strain. When a parent forces a child to use large print instead of learning braille because they aren't "totally blind", I get so angry. At that point they are making it more about them and not what is best for their child. They'd rather have a child with eye pain than admit their child is blind. Yes, I said it, blind. That five letter word so many people are afraid to use. Yes, I might have some residual vision, but I am functionally blind, and so is a child with a degenerative eye disease who may have 20/600 acuity in one eye!

I don't only blame parents of course. They go on what the doctors tell them a lot, and who can really blame them? If I popped out a kid with a disability I knew nothing about, I'd rely on the doctors too to a certain extent. Blindness is not a death sentence. Does it make life harder sometimes? Yes. But a lot of that has to do with people's attitudes towards it, and not the limitations of the condition itself. Below is the text of my opinion which I couldn't submit.

Title: The Myth of the Tragedy of Blindness

While I am of course not opposed to the idea of medical research surrounding LCA, I am constantly dismayed by how negatively the medical community views blindness. As an adult who has had LCA all of my life, I can say firsthand that blindness is not a tragedy. With proper training and a positive philosophy, blindness is reduced to a mere inconvenience like left handedness. I have seen too many eye doctors encourage parents to make their child use optical aids and read large print when that causes the child much more strain and eye discomfort than the eye disease itself. Teaching your child that it is respectable to be blind is much more important than spending thousands of dollars trying to save their sight. Even if the technology gives a slight improvement, being functionally blind is still blind. I'd much rather read Braille and use a cane than look ridiculous putting my face right on a page to read it, or fall over myself because I don't want to "look blind". If you are the parent of a child with LCA, I know it is probably foreign and frightening in some ways. You can't imagine living without vision, so it is difficult for you to imagine such a life for your child. But I am 24, graduating from college, and living on my own several hundred miles away from family. I function just fine, and I do so because my mom didn't force me to be sighted. She raised me like she would any other child, except I just happened to read with my fingers and use a cane. I encourage you to please check out www.nfb.org. The National Federation of the Blind has excellent resources for the blind and parents of blind children. A diagnosis of blindness is not a death sentence, and as a blind person, I resent that I often read articles treating it as one.

Now that I've probably pissed off about half of my readers, I'm off to pop more pills and make this headache go away.

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May. 11th, 2010 10:51 pm (UTC)
I feel you.

I was one of those oh-so-lucky children who wasn't tought braille until high school because I wasn't totally blind. Now, my brail skills suck, and having LCA myself, I can no longer read large print even slowly and painfully like I used to.

It's crap like this that makes me want to become a rehab teacher despite the fact that five years ago that would have been my last choice of a career. Someone needs to do something about the bullshit otherwise known as our education system, and if I have to be one of those someone's than so be it.

Sorry for the rant. I'm... just a bit resentful lately.
May. 11th, 2010 11:01 pm (UTC)
I agree with your thoughts in general, especially about learning alternative techniques when young. However, I also believe that parents should be encouraged to pursue treatment as appropriate. I grew up in an apparently unusual situation in that I was encouraged to use both my vision and alternative techniques. I believe that this is the ideal way to go, not discouraging parents from giving their children the chance to have some usable vision. I have always had an extremely small amount of usable vision compared to most people; but I'm glad to have had the ability to read on CCTV for a time. The experience of being a dual print/braille reader is helpful to me in a number of ways now. At this point in my life, I am capable of navigating without vision, but it is still useful to me and the concepts that I learned because of having it available were important in my life. I see no need to take this opportunity from a child if it is possible for a child to spend part or all of their life with some vision.
May. 11th, 2010 11:12 pm (UTC)
Re: thoughts
You and I will probably always fundamentally disagree on some aspects of this. My feeling is that you don't have to teach a kid how to use vision they have. That is natural. You do, however, have to teach a child how to not use their vision, especially when alternative techniques will be more efficient and effective. There is nothing wrong with having residual vision. I'm not saying cut childrens eyes out and ban them from the world. My point is that there is such a premium places on having vision to the detriment of many children in the education system. Very rarely are children taught to be true "duel readers". Use it until you lose it is the mentality rather than making children as successful and productive as possible. Being able to learn to read 300 words a minute in braille is more efficient than reading 50 words a minute on a CC TV. It is about success, not getting by. I'm not saying that is what you did. You have made what works for you work for you, and you were lucky enough to be encouraged to learn alternative techniques. Most kids with any type of residual vision are not. If it was up to the school system, I probably wouldn't have leaned braille until high school, and that would've been too late in many ways. I learned young, and therefore was able to become really good and fast at it. Someone learning it in high school probably won't have the time or advantage of youth to catch up to that level, and then keeping up with the amount of reading that high school requires will be difficult.
May. 11th, 2010 11:44 pm (UTC)
Re: thoughts
What I had to learn in using my vision was that things existed above the points where I looked naturally. These were the skills I was taught: how to scan the whole environment and how to integrate my tactile and auditory senses to cover places I could not see or wasn't scanning at the moment. These are things I think NFB centers would do well to implement for some clients, perhaps alternating a few lessons under sleepshades with lessons outside sleepshades so that people begin to integrate skills. Otherwise they go home and go back to what they have done all their lives because it is comfortable--I've seen it happen many times.

I agree about braille efficiency vs. slow print efficiency. I sill disagree about medical interventions... There is no way to know what the outcome of some of those interventions will be; and sometimes they are quite good.
May. 11th, 2010 11:51 pm (UTC)
I think people approach blindness the same way they approach any disease or impairment. They view it as something to beat or overcome. To adapt is a way to admit defeat. I mean, it's human nature to be a fighter and not give in. I don't think you can really berate people for that.
May. 13th, 2010 02:03 pm (UTC)
different skills are good
I have usher syndrome, have partial sight, partial hearing. I can still see well enough to read well with larger fonts and high contrast on the computer screen. I am also in the process of learning to use JAWS and learning to read braille. I didn't learn adaptive techniques while growing up, since I had "normal vision" then and was not diagnosed with usher syndrome until I was in my early 20s. (This is common for those of us with RP or Ushers, to have normal or good central / reading vision until we are adults) I work with people who are blind / low vision / deaf-blind and have noticed that there are so many people with so little vision out there who do not read braille. Many of those people who do not read braille have very poor literacy skills. While they can access the computer using a screenreader, when they type something, it looks like it was written by a 2nd grader. I'm sure this limits their employability, since businesses expect communication sent from the company to look professional. While I'm a very visual person, I strongly believe that it is important for those who are blind or low vision to have all the tools they need, as opposed to being forced to use limited sight as long as possible. Since I am losing my vision, I'm currently working on making the transition to using screenreaders and braille and it's a real challenge since I'm used to using my sight. I'm still glad that I had the option to use it, of course. I see people who are deaf-blind using the computer, some using ZoomText with huge magnification and others using a braille display. There's no comparison between the two. Those using ZoomText may have more vision than the person using the braille display. However, the person using the braille display is zipping along reading the contents of the screen, while the ZoomText user is slowly and painstakingly reading one huge word at a time.
Jul. 24th, 2010 03:41 pm (UTC)
Re: different skills are good
Hi, my name is Beth Finke and I found your blog on a list of blogs written by people who are blind. I am blind, too, and keep a blog -- and like you, those CAPTCHA things drive me crazy!! A book called "Sight Unseen" by Georgina Kleege is a good one about what it's like to struggle with transitioning from using what little sight one has to braille, etc.
My blog, if you want to check it out, is

Keep up the good work --
May. 13th, 2010 02:40 pm (UTC)
"Blindness is not a death sentence." I really appreciate this statement and often times can't seem to drill it hard enough for those who refuse to understand.

We should make tshirts.
Jul. 13th, 2010 03:47 am (UTC)
Braille Product Review
Hey there, I really liked your blog and I'm wondering if this story idea will contribute.

This is Jessica Webster from Cleanlogic Bath & Body Care. I hope you enjoyed your 4th of July weekend!

I'm contacting you to see if you would be interested in reviewing several of our products on your blog.

Cleanlogic is a fairly new company with a great story and growing fast. We are first in the industry to 1) include Nopal Cactus extracts into our formulas of body washes and lotions and 2) the first in the industry to include functional Braille onto our bottles so our visually impaired and blind consumers can identify their products by touch.

We are also donating a percentage of our sales to Inspiration Foundation. I.F. is an organization that provides blind and visually impaired individuals with adaptive computer technology and professional career opportunities.

Here is a youtube link to a video we created for I.F.:


Our message as a skin care company is basically this:

The purchase of a Cleanlogic product is a multi-dimensional gain. The product itself is of the highest quality, plus, economically it's a steal. It has innovative design, and is following the trends of the everyday consumer. More everyday consumers are paying attention to what they buy, what it’s made with and what impact it will have on the community. Cleanlogic covers all of these bases.

I have attached several other documents available for you such as a recent press release and our product fact sheet. These would be helpful in your review (such as the newly discovered benefits of Nopal). We also have some really unique products like our soap + sponge combo and stretchy scrubbories.

If you're interested in reviewing our products, we would love to send you an assortment and get this thing started. Please email me at jwebster310@yahoo.com

Thanks & hope to hear from you soon,

Jessica Webster

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