Archives for May 2015

Last month, I talked about Cochlear Implants: the good, the bad and the ugly. I wanted to show a totally unbiased case study about CIs, as they are called for short. The decision to choose a CI can be a very difficult one to make and must be made by an individual based on their own personal circumstances. There is no right and only answer for everyone. I didn’t want to mention my own decision to prevent possibly swaying someone in either direction that may not be as beneficial for them. The question is asked of me often, though, and many of my readers may have wanted to ask me, but they really couldn’t through this forum. It is because people always ask me why I have made my choice that I will explain now, but only to answer that question and not to say this is the decision I think anyone else should make. Please understand that, Dear Reader.

I have chosen for now not to have a CI. I have lived with hearing loss and with the progressing severity of loss all my life. I never felt it was a serious disadvantage before I lost the majority of my sight because I had developed coping skills such as reading lips, people’s body language, and situations to put it simply. With the loss of sight, life did become more difficult, and isolation became more of a friend than I wanted. Seeking to reduce the isolation, fear, and dependence, I looked at many options including the CI. I researched deeply and carefully in regards to all options and prayed for guidance before I decided that I would not get a CI.

My decision is based on the facts that I have now gained even more skills such as braille, tactile ASL, increased tactile detection and understanding among other less definable skills that have helped to ease the isolation and the fears of being DeafBlind.

One factor was and is that the doctors that I have seen (many, I assure you) vary greatly on whether I am a good candidate for a CI because they can’t determine how much auditory nerve damage I have which would make a CI useless. I do not want to risk major surgery and wind up with a device that doesn’t work, and that chance could be significant in my case.

Another reason is I do not want to destroy the cochlear and auditory nerve when technology is advancing quickly and the near to somewhat near future may bring a truer cure for deafness and/or blindness such as stem cell implantation to actually regrow the damaged parts of my cochlear.

I also already suffer from increasing balance issues and vertigo that will possibly and most likely worsen after the surgery is performed. I do not like having to deal with these issues now and would not want to suffer worsening degrees of these issues.

A minor factor is that many sounds, except for music, only made me irritable and sensitive when I could hear some sounds. Silence doesn’t bother me that much. It really wasn’t the lack of hearing that presented the biggest challenges in my life. It was the coupling of the loss of sight.

If a chance to regain my sight (even just partially) presented itself, I would consider that more readily. I would still be careful about a device that destroyed my eyes in some way to attach electrodes or camera arrays, but I would probably think longer before dismissing any ways to regain my sight. I guess if I had to choose between regaining hearing or regaining vision in a non-permanent cure method such as implantation, I would choose vision first. That might be hard for some to understand, but I have spent my life deaf, and I am used to it. I haven’t spent my life blind, so I miss my sight more.

Those who know me and see me often, know that I have developed skills and abilities that make me seem less deaf and blind than I am despite being almost total and the residual is definitely not functionally useful at all. With my coping skills and relationship with Jesus, I function well. I feel independent to some degree. I have dignity. I am not as lonely with my connections to the world through tactile ASL and the internet through braille. I have ways to continue teaching students of all kinds and function as the administrator of our school. I have ways to work as a writer that seems to do good for others in many ways.

Through all of this, I also have gained an even closer relationship with my Lord and Savior, Jesus Christ. To put it simply, I am ok just as I am right now. God is taking good care of me. God has been good and is good to me, so as I said before, I am ok. I am actually more than ok just as I am right now.

So, I do not need a CI right now. I can be independent to a great degree with my independent living skills, cane skills, environmental awareness skills, and wonderful, loving guide dog. I am productive and successful in life contributing to take care of myself and to be a contributing member of society. That is the most important factor for being happy and having joy in life. I can, and may, change my mind later, but for now I am ok here with God in the Dark Silence using the touches I have to access and influence the world. I will just  wait with God to see what the future brings.

 

 

Braille is dead!

No one needs Braille anymore!

Technology has made Braille useless!

Those are three sentences I have heard recently, and none are true. Unfortunately, I heard those words from qualified special educators and vocational counselors for the blind. Not only do many of the growing number of DeafBlind people not have another option, blind and DeafBlind children need high reading levels and, more importantly, the written aspect of language to fully develop their thinking skills to become successful adults. Braille isn’t dead, and we can’t let it die because “experts” are blind to its benefits.

Technology such as text-to-speech is bringing books, web pages, and even microwave buttons to life for the hearing blind. It is a needed and welcome option for many because it does bring independence and convenience to those who hear well enough to understand. This technology also doesn’t require an expensive add-on device to use it. In education, text-to-speech allows hearing blind children to have instant access to much of the same resources that their sighted peers are using. Teachers do not need to find adapted resources beyond their computer or tablet. Districts save money not having to purchase embossed documents specifically for the blind or hire teachers that can teach Braille to blind students or purchase very expensive electronic Braille displays for their computers and other electronic devices. It is for all these reasons and more that text to speech technology is the preference. In the end, it is always about the bottom line – the money.

Unfortunately, there are many who don’t have enough hearing (or any hearing) to use it. For those of us who can’t hear well enough, we must use Braille to access books, internet, and even much of the objects in the world like microwaves, washers and dryers, and even public bathrooms. Even for hearing blind, those things that talk are more expensive and wear out often before the end of the product’s life. Many things can’t have audio attached to them, including even the small devices that record short messages used for labeling cans or prescription bottles. Board game components like cards, appliance switches, wall signs, and many more just can’t easily or inexpensively be set for audio. This is when Braille labeling makes more sense economically and physically. There are just many instances where Braille use is needed or even preferred.

All that aside, I can understand the budget factors for text-to-speech and the speed of hearing your computer or microwave over reading the Braille for an adult. What makes my hair stand on end or gets me riled with anger is when school officials decide that they are not going to teach Braille to a blind or DeafBlind child even to teach writing. Blind children are using voice recognition software in some schools instead of, not along side of, learning to write. Essentially, they are not teaching Braille at all or limiting it to the alphabet for letter recognition. If there is any residual vision, the schools are trying to limit the teaching to large print reading. “Low level reading skills with print are acceptable,” “Listening to words is enough,” “Let them respond orally or in sign language.” All of these are the excuses that have been given to me. These attitudes in practice will only limit the potential of the student.

Writing is the activity that drives the development of the brain in higher and more advanced stages of critical thinking skills. Historically, and evidenced in numerous studies, writing has been suggested to improve thinking because it requires ideas to be made explicit and to evaluate and choose tools necessary for effective discourse. Writing allows for knowledge to be restructured improving higher-order thinking skills. Reading and writing is necessary for any student’s education. We have high standards for requiring that with other students. We even want to base teacher pay on the results of implementing these standards. With blind and DeafBlind children, though, we want to drop those standards in order to save pennies.

Give a child what they need to learn and grow, and the child will be productive as an adult and be less dependent on society and actually contribute. It reminds me of the old adage of being penny-wise and pound foolish. Trying to save pennies now, costs you more in the future when the children will spend the bulk of their lives being supported by taxpayer money. Give them what they need to be better suited to support themselves.

To limit that because a child can’t see, just because of budget constraints, is mind boggling. To not encourage all of the language process prevents a student from fully developing their cognitive skills and will limit their future in many ways. We should not and must not allow these attitudes or practices to take hold. A blind child, a DeafBlind child, needs Braille to reach their potential. Even children with residual sight should have Braille education because so often the level of residual vision limits the child to lower reading skills which limits thinking skill development. Helping a child reach their potential of being as independent and contributing to society as much as possible should be a priority for educators.

It should be a priority because we care for all children; but if not, since money is always the main focus, the task should be to lessen the burden on society. For this reason, if for none other, it becomes the responsibility of all of us to insist that our schools and our society support Braille use and Braille education. Let’s not be penny wise and pound foolish and maybe, in the end, with successful blind and DeafBlind adults as evidence, we will do what is needed because we care about the children and not just a “bottom line.”

Studies on Writing and Reasoning:

Kurfiss J. G. Association for the Study of Higher Education. Washington, DC: George Washington University; 1988. Critical Thinking: Theory, Research, Practice, and Possibilities.

Applebee A. N. Writing and reasoning. Rev. Educ. Res. 1984;54(4):577–596.

Resnick L. B. Education and Learning To Think. Washington DC: National Academy Press; 1987.