Tags: blindness


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.

 New Solution by SHIROCK from Nashville for Haiti (Rating: 0)

Live long, and prosper

I'm alive!

I know, I know, It is a miracle. Twitter has been the way I'm keeping up with a lot of people these days, but I find I miss LJ, (as I always do after a few months of absence). I've been reading a lot of your entries, (even if comments have been sparse).

I'm in the home stretch of my undergraduate career. I basically hate Belmont, (they enjoy making my life difficult), but other than that, I think things are moving along smoothly. I am stressed to the absolute limit, but what can you do. What must be done must be done.

I'm trying to sell a Juliet Pro60 braille embosser, a Voice Sense notetaker, and a SyncBraille 32 braille display. All prices are negotiable at this point since I need money so desperately. The situation is really bad. I don't want to go into too much detail, but trust me when I say I'm so deep in the hole, finding a way out almost feels impossible sometimes.

In good news, I'm in a loving, nurturing relationship. Kevin is absolutely the most wonderful man in the world...well I think so at least. We aren't without are problems sometimes, but we always communicate, and it is never a mystery to me hat he's thinking. This is a refreshing change.

I have also figured out what I'm doing post graduation. I'll be in Dallas for the NFB convention in July, then it is off to Louisiana Center for the Blind for me. For those who don't know, it is a 6-9 month independence training program which will help me brush up on and improve a lot of my skills. I'm coming in with a reasonably high skill set, but I've lost a lot of vision over the past six years, and feel like this will not only improve my skills in many areas, but my confidence as well. I plan to start a training blog, (which also will deal with other blindness related issues). Kevin is helping me develop this idea more, so I will keep you all posted.

If anyone wants the equipment mentioned above, or more information, please EMail me at brileyp@gmail.com. Feel free to pass it on to anyone who wants it. It is serious, and I am even willing to consider payment plans, (provided the person is trustworthy).

There is a lot more to report, but this will have to do for now. I must head off to the bank then kick myself until I finish this homework. Boo.

Miss you all!