Attention Media: There is No Such Thing as a Cure for Blindness

Last week the media got on the"doctors cure blindness" band wagon again because a small number of children with Lieber's Congenital Amaurosis (LCA) have had their vision restored thanks to gene therapy. As exciting as this is, I am sick and tired of the main stream media misleading the public about what it means to be blind and what can and can not bring our vision back. It is time that the media take responsibility for actually informing people, which means not clumping all of the blind into one category.

I have written a few posts here about possible ways that doctors may one day restore my vision. All of them have centered around treatment for retinal disease because that's what I am dealing with. I've been very specific about this because there is no one cure for blindness. The eye is a very complex organ in the human body. This complexity means that numerous things can go wrong, which means that the task of restoring vision to all blind people in the world is a task that may never be accomplished.

I am really passionate about this need for the media to be truthful with their headlines because they are the main source of information for the masses. The last thing that people like me need is for our friends to tell us to tune into a news story because it talks about curing blindness. This will likely lead to us getting our hopes up only to find out that the disease the doctors are treating isn't what we have. I understand the need and desire to pull readers and viewers in with a catchy headline, but the headline shouldn't be misleading.

People with disabilities spend their whole lives trying their best to educate those around them. Imagine how much easier our jobs would be if the media actually gave people useful and correct information. All they have to do is change their headlines slightly to reflect what the story is actually about, but I guess that would mean that they couldn't mislead us anymore.

If we can get them to stop treating blindness as one disease, maybe just maybe we can stop them from talking about how "normal" a life someone can have once their vision is restored. Do we have a fighting chance?

Descriptive Audio Comes to All Upcoming Sony and Universal DVD Releases

Imagine if you can what it would be like to watch a film with your eyes closed. For those of us who are blind or low vision, this is something we live with every time we watch a film at home or at the theater. For some, movies aren't much fun due to the fact that we miss so much whenever there is no dialogue. Thankfully though, there is a way to make films and television fun for the blind. It's called
descriptive audio.

Descriptive audio is just what it sounds like. Every time there's no dialogue, the scene is described by a narrator. For many years the choices for described movies was very small, but thanks to the work of The WGBH Media Access Group and studios like Sony and Universal, the library is growing every day. In fact, earlier this year Sony made a commitment that every new DVD release they make will include a descriptive audio track.

Although I'm excited and encouraged that studios like Sony are finally on board when it comes to serving all their viewers, I have a problem with the fact that the descriptive audio track can only be turned on by selecting it in a menu. This wouldn't be a problem except the menus are completely visual. This means that the non-sighted person will still need sighted assistance to activate the audio track.

I know what you're saying. We're making progress and I should be happy. I am happy, but until menus on dvd's become accessible, having the track is only good for those who can find a way to turn it on. Maybe what they should do instead is have the default set to have the descriptive audio track activated, and you have to turn it off if you don't want it on when you're watching. Problem solved.

HOw much more likely are you to watch a film if it has a descriptive audio track?

Social Security is Not Above the Law

So it turns out that the Social Security Administration is not above the law. According to The San Francisco Chronicle, a judge in California has ordered the SSA to offer accessible formats to blind and visually impaired clients.

After four years of litigation, the ACB and the blind community can take a sigh of relief. No longer will the SSA be able to just send print correspondence to blind clients and expect that the letters will be read. They now will have to provide clients with the format that best fits their needs. The judge has ordered the SSA to comply with his ruling by April of next year. Part of the ruling is that all blind and visually impaired clients be notified of their right to request accessible formats by this December. The formats that will be available include braille, cd, and email by special request.

I only wish that this decision had been made years ago, maybe then I wouldn't have lost my benefits. But if I ever qualify for them in the future, I'll know that I will be able to read the letters that are sent to me.

For more information about the case and my SSA story please read "Fighting to Get the Social Security Administration to Provide Correspondence in Accessible Formats".

How will this change how you interact with the SSA? Do you think having accessible formats will lead to fewer people losing their benefits?

Kindle Step Aside: A New Free Accessible E-book Reader Will Be Arriving Soon

I have spoken in length about how the Kindle has TTS enabled on it, but yet it is still not an accessible device for the blind. Now that may no longer matter. I still want Amazon to do the right thing and make the Kindle fully accessible, but in the meantime Ray Kurzweil and the NFB have teamed up to design a free and accessible e-book reader.

The software that still has no official name is set to be released by the end of November. The innovative piece of technology will be free and usable on multiple formats including Macs, PCs, the IPhone, and Windows mobile devices. The software is for everyone who is looking for an e-book reader. Kurzweil is offering the program for free because he will make money off the sale of the books sold for the reader.

At this point the reader will have access to over a million free public domain titles, and over a million other book titles. Publishers are continuing to sign up to participate in the program.

I knew that Amazon would someday have a real competitor, but I didn't know that it would end up being a company that offers something accessible to me. I think this software is going to really open the doors to people with print disabilities. We will now be able to spend our money proudly on books that we can read.

For a more comprehensive look at this technology visit this link.

Changing the Perception of Braille

I recently watched a Ted talk that focuses on the idea that how we feel about something is totally based on our perception. It seems to me that in ore for us to improve braille literacy, we are going to have to change people's perceptions. Organizations like the NFB and ACB are already doing things to help change people's attitudes towards braille, but I think we can go even further.

Many people are choosing to learn sign language because they think it's cool. So the question is how do we make braille cool? I think we have to start with children and teens. When we're younger, we tend to me more likely to accept change and set trends. With this in mind, I have a few ideas of how we can make braille cool in the eyes of our children, and if we can do that, then maybe that will translate to the adults in their life.

My first idea is making braille part of the curriculum for all children if a blind child is a part of the class. This will normalize reading braille for the child with vision problems and give the other children in his/her class the chance to learn how to communicate with their blind class mate. The sighted children don't need to learn to be proficient in braille, but they should learn enough to be able to write to their fellow class mates and take examples home to their parents.

Another possibility would be to have the blind child teach braille to their sighted peers. This provides an opportunity for the blind child to show pride in how they read and write, while bringing awareness to their fellow sighted peers. In my opinion, one of the reasons why children with disabilities are picked on is simply because their different. If children are exposed to, and taught how to communicate with their class mates who are different, they are less likely to tease.

You'll notice that in both of these suggestions, sighted children are learning braille. The reason why I think this is important is because it's a way to demonstrate to children with low vision that braille doesn't make someone blind, but in fact can be a tool for everyone. , For me, braille became cool once my sighted classmates started asking me to teach them. The day I got my first notes given to me in braille from my sighted friends was the day that I no longer felt like learning braille was a waste of my time. I think if this kind of feeling can happen for all children who are losing their sight, then braille can be something their proud of rather then something they are ashamed to use.

So what do you think of my ideas? How do you think we can change the perception of braille and increase literacy?

Improving My Braille Skills

Starting next month, I will be participating in the National Federation of the Blind's Braille Leaders are Readers program. This program is designed to encourage reading braille and increase braille literacy. This is the first year that they're allowing adults to participate, so in the interest of being a better braille reader, I've decided to participate.

Part of the registration process was figuring out what level of reading you are at. Even though I've known braille for more than a decade, I am still a beginner when it comes to my reading speed. This makes me a little sad, but I'm not surprised since I use braille so infrequently. My goal as a beginner reader is to read the most pages and increase my speed.

I've already chosen the book that I will be reading, but I forgot to check how many volumes of braille it was before I ordered it. I will be reading Ivanhoe by Sir Walter Scott. It is in 5 volumes of braille, so if I finish it before the end of the decade I will be surprised. As of this morning I am on page 19 of the braille text. I have no idea what page in the actual book that is, but I am enjoying it so far.

For all of my braille readers out there, I really encourage you to participate in this program. If you are a parent of a child with vision problems, maybe this is the time for them to learn braille if they don't already. Happy reading everyone.

Using Stem Cells to Treat Retinal Disease

I am currently reading "Crashing Through" which has made me think a lot about the day when doctors are able to restore my vision. I have already told you about the artificial retina, which one day may provide usable vision for people like me, but this is not the only technique that researchers are looking at to restore vision. Another promising technique may be the use of stem cells.

Recently, researchers at the University of Wisconsin Madison, have been able to make retinal cells from two different kinds of stem cells. The two types included embryonic and adult skin cells. Turning adult skin cells into retinal cells is of particular interest, because it might mean that new retinal cells could be created from a patients own body. When you use tissue from the patient in a transplant, there is little or no chance of rejection. At this point the researchers are at the beginning stages of learning what these break throughs mean. For now, they want to continue to study the development of these new retinal cells, and then they hope to see if there is a way to restore vision.

This to me is very exciting. Even if it is 10 years or more down the road before they're using these stem cells in patients, it is another possibility that I may have my vision restored.

To learn more about the research visit this link.

Guide to Making Board Games Accessible to the Blind

One of my more recent hobbies has been playing board games, and I'm not talking about the board games of my childhood. The games that my friends and I play take strategy, and usually require a lot of thinking. For a long time I avoided board games because after I lost the ability to read print, I felt like board games were no longer an option to me. This was my feeling until I was connected to the Corvallis Gamers Group. These wonderful people who I now call my friends really want to include me and make sure that I get a chance to play a variety of games despite my inability to see. Since I believe that board gaming is something that the blind can enjoy, I've decided to come up with a short guide on how to make games playable by those who can't see.

To start off with, I want to list some of my favorite games. Most of these games use what's called worker placement, and they often have very few cards. If they do have cards, the cards tend not to have a great deal of information on them.

• Stone Age
• Caylus
• Thebes
• Age of Empires 3
• Puerto Rico
• Agricola
• Pirates Cove
• Apples to Apples

Now that you have a list a games to check out, here are some strategies to make game play easier for those of us who can't see.

• Make sure to define what all the game pieces mean before the game starts. If the game pieces are not different enough for the person to tell, consider adding tactile markers to distinguish the pieces. If the pieces are large enough, add braille so that the person will know exactly what the pieces are.
• Add braille labels to cards: If the cards don't have a lot of info on them, you can add braille labels using a slate and stylus, a brailler, or a braille labeler. If the cards have more info then you can braille out, make a legend for the cards using braille paper, and then you only have to have a small number of braille characters on each card
• If the game utilizes dice, use braille dice, or dice that is readable by fingers..
• If the games don't have any tactile modifications yet, make sure to be patient and be willing to answer questions that the player is going to have.
• Try to stay away from games that have complicated boards with maps, or those that can not be touched without messing up game play. Most blind players will want to touch the board and fulling participate which means they will likely bump things.

I'm hoping that you've noticed that most of these changes will be easy to make. FOr me, there is no reason why the blind can't play board games because they can't read print. Obviously some games are either going to be extremely challenging or impossible, but there are plenty that with practice and modification are very playable.

What board games do you enjoy playing? What other suggestions do you have to make board games playable for the blind?

Medical Debt Leads to Loss of Vision

It is not often that I talk about really controversial issues, but I recently read a story that broke my heart. As many of you know, congress is deeply debating if and how we should change our health care system. Although I personally have never been without health care, or had medical debt, I still think there are fundamental problems with the system that must be changed.

The problem the article addresses is what's called "under insured" or "under covered". What it really amounts to though, is families swimming in medical debt, and people giving up treatment because they can't afford it. Monique Zimmerman-Stein knows all about this. She and her two daughters suffer from a rare disorder called Stickler's syndrome. This disease devolves joints and causes retinal detachment. Monique hasn't seen her daughters for two years, and now she's giving up treatment to restore the little vision she has left to save money for her daughters' treatment. Her family has insurance, but it isn't enough. The family has medical bills that continue to pile up, and unless something changes, they will likely become another family that has to file for bankruptcy due to medical debt.

Nothing about this situation is right. No family should have to stop treatment due to lack of funds. No family should have to worry about paying a medical bill or paying for rent. For me, this kind of scenario has to go away. If we're really going to provide Americans with real health care reform, then part of the plan must include a cap on how much people owe for medical bills. Monique and people like her didn't ask to be afflicted with their medical conditions, but they're being punished for having them. I have been really fortunate that my eye condition doesn't need medical attention, but this may not always be the case.

If you have vision loss, how might things change if you didn't have health care? If you don't have health care, what kind of medical care aren't you getting because you're not insured?