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Posts Tagged ‘American Association for the DeafBlind’


Have you ever been told or said that you can’t do something because of limitations or even disabilities? Well, let me share with you what I have learned through my own limitations and disabilities. Check out my post for this month on Homeschool Mosaics and then stick around and check out all the other great and wonderful writers found all in this one terrific place!

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Laura Dewey Bridgeman

This week is DeafBlind Awareness Week! Helen Keller’s birthday was June 27th. She and her predecessor, Laura Bridgman, made advancements for all DeafBlind people. Both worked hard to overcome their disabilities to become educated. They both wrote and spoke about the needs of the disabled.
Today, there are approximately 100,000 DeafBlind children and adults. We all work hard to overcome the obstacles in our life. We all want to be as independent as possible. We all want to contribute to society and make the world a better place. We are capable of learning and doing many things. We prove that every day.
Sometimes, though, we need help. Education, training, assessable technology, support service providers, etc. are all expensive. There is also a lot of medical research going on to help improve our lives and even one day to provide cures for the causes of DeafBlindness. There are a few organizations that help the DeafBlind. Your support would be appreciated.
Helen Keller National Center for DeafBlind Youth and Adults in Sands Point, NY is the largest by far. They provide intensive training in all areas of a DeafBlind adult’s life. You can learn more about them at http://www.hknc.org.
The American Association for The DeafBlind is another. It is an organization run by the DeafBlind to help educate the public, government, etc. about the needs of the DeafBlind. They also work to provide support to the DeafBlind. You can learn more about them at http://www.aadb.org.
Another organization that helps to provide training and accessible technology to DeafBlind children and adults is DeafBlind Hope. DeafBlind Hope is a small non-profit, but over 99% of the donations go straight to the DeafBlind clients of DeafBlind Hope. We assist parents in learning how to teach their DeafBlind children and raise funds to provide training for adults. We provide technology to children and adults that is suitable for the individual needs. We also work to teach the public that the DeafBlind can do if given the tools they need to become independent. DeafBlind Hope is another organization operated by the DeafBlind for the DeafBlind. The CEO is Renée K. Walker who is DeafBlind and writes this blog. Yes, I am talking about me. I sincerely work every day to make the lives of the DeafBlind easier and more productive. We all just want to become as independent as possible and do our part in making the world a better place. You can find out more about us at http://deafblindhope.org
Please learn more about deafblindness and how it affects these children and adults. Consider helping one of these organizations. You will be bringing Hope to the DeafBlind!

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Touch Points
By Renée Walker

Finding Release from Isolation

As I contemplated the topic of my column for this issue, I kept being drawn back to a statement made by a friend in response to my last column on the issue of a national SSP for the DeafBlind. Her comment had been a positive one about the article, but a statement that support at home from family and friends is needed the most. This refrain I hear from many DeafBlind and actually find myself repeating often. I really felt the need to probe more deeply this issue and these feelings that are the source of this refrain. Drawing from my own experiences and statements from others, we will be exploring the feelings of isolation and loneliness of DeafBlind people and the fears of the unknown and of helplessness of many hearing/sighted as they deal with a DeafBlind loved one. Be mindful that no one is to blame for the situation we, DeafBlind, find ourselves in. Together, we and our circle of loved ones must learn to cope and enrich each other’s lives.
I can only tell you for certain of my feelings as a person who was deaf by late childhood with growing, but uncertain vision problems who seemed to suddenly become blind around age 40. My experiences and those of whom have shared the most with me are from a blinded later in life perspective. Some have more hearing than I have ever had though most would not have known the extent of my hearing loss before I lost the vast majority of my vision seemingly at once. Our experiences now come with some perception of sight and sound from earlier in life. There is an expression that goes, “Ignorance is bliss.” I have wondered if it is easier to be DeafBlind if you were so from birth or earlier in life without any memory of sight and sound. I can’t fully answer that, but I think the challenges are very different, and some such as education are even more difficult, but the feelings of isolation and loneliness can be the same. For me, I am glad that I have a perception of sounds and visual memories. As far as sound, I truly only miss the sound of music, but I still feel it and now in ways deeper than ever before. For me, the loss of vision is what seemed to be the diverted path leading to invisibility. Being deaf didn’t affect me as much possibly as part of that ignorance is bliss theory because I lost my hearing progressively beginning shortly after birth. I think more of the reason was that I could still gain so much information from the world around me visually. I was oral because there were no other deaf people in the places I grew up. My mother was deaf, and so was an uncle, but I lived far from him and saw him only on occasion. My mother and uncle grew up in a different time where being deaf was not a good thing and even a feared thing, so they hid their deafness. They were excellent lip readers and with aids could hear some environmental sounds and possibly learned to decode words although early childhood found them as hard of hearing. As with me, early hearing allowed me to develop speech with a normal tone. My lip reading skill is also excellent if I can see a person’s lips, but I only feel comfortable getting that close to my husband. In the past, people thought I could hear more than I could. With my vision decreasing slowly, I was able to go many years without facing the issue at all. At 40, I could no longer do that. Spiritually, I was prepared. God led me on a journey in the years prior that brought me so close to Him that the coming and unknown blow of being DeafBlind was dulled. I took the changes in stride and got to work learning new ways to be as independent as possible. I learned braille and ASL. I learned new ways to make sure I could take care of myself. What I didn’t expect was that those around me wouldn’t be as strong in learning to deal with me differently. I soon found myself with none of the friends I had before from my active life as a mother, teacher, Boy Scoutmaster (I had sons), church member, American Red Cross volunteer, and more. The only connection to my former life was my family and Southeastern Guide Dogs, Inc. (SEGDI) where we had volunteered as puppy raisers for many years as a homeschool project. The family struggled to deal with my changes, but they were there. The members of SEGDI and especially one, Julie, rallied around me and encouraged me as I stepped out in faith to learn new skills including getting my guide dog partner, Joey, who is a great help to my sanity. This connection helped in the initial years, but as the residual vision decreased taking away that imagined hearing everyone thought I had and the sudden death of my biggest advocate, Julie, this connection grew fainter because they truly only understood the loss of one sense, vision.
Although I lost all other connections and the seeming invisibility was almost complete, my family was still there, but they desperately wanted to pretend that I was the same and wanted me to act and do for them the same as before. My inability to do that despite my efforts led to frustration for us all. Communication is the most difficult especially now that there is no vision or hearing. The immediate family has struggled to remember many signs, so the limited communication comes from the internet-connected computer as we type to each other on chat programs that are somewhat braille friendly. Other more meaningful conversations seldom take place. I miss the closeness that I once had with my children and even with my husband. Our relationship is more based on silent care giving. We talk through the chat program about day to day issues like when the pest control man is coming, doctors’ appointments, and what technology I need. Deep conversations are few and far between. This isn’t from my husband not trying. It stems from lack of good braille skills and chat programs not being very braille friendly. My braille skills are fairly good and improving for someone who has only known braille for about three years, and I practice every day; but it will take some time before my speed and comprehension equals someone who has read braille since a child and will never reach the speed I had as a visual reader of print. Books are my love, though, so I will never give up trying. If I fault my husband and my immediate family for anything, it is for not trying to remember they live with a DeafBlind person now. You can’t leave the dishwasher door down or a pile of books on the floor or a cabinet door open. Safety in my own home should not be a worry that I have to deal with daily. For the most part though, the growing invisibility I feel and have felt is not anyone’s fault. It is certainly not mine as I have worked hard to stay independent and learn the skills to communicate with others in many ways. I don’t fault my family who are just grieving the loss of their wife and mother as I once was and who are just coping in the best way they know how with the difficulties we all face. I don’t even fault those friends, extended family, and acquaintances who have faded from view because they were too uncomfortable or afraid and feeling hopeless to know how to push through the dark silence that had engulfed and walled me in.
There is no one to blame for my isolation and loneliness, and I feel that is probably the case for many DeafBlind. Despite the new skills and technology, it is still ever present. I am not without hope for many reasons, as there are family and new friends who do try to break through the barrier. I socialize with DeafBlind friends over the internet and at the occasional social event or camp that I can attend. New sighted friends, both hearing and Deaf, in the area try to help as they can. The communication barrier is eased by those who know ASL or even some who try to fingerspell or type on my keyboard as I read on my braille display. This is support that I can use and enjoy. The ability to have a friend who can sign or type to me and take me shopping with them or go with me to a park or a local festival does wonders. The first step needed for true support is to have someone care enough to reach out. Yes, my differences can make you uncomfortable at first, but the person I am inside is just as real and human as I was before I lost my sight and hearing. This is true for all DeafBlind no matter how much they have lost in vision and hearing. The first step really is just making an effort.
Family and friends would do well to try to learn some signs or Fingerspelling. Communication is easier and faster in tactile ASL or even Fingerspelling with me because I am fast in processing. I can talk most of the time unless my asthma is triggered. That helps some people feel more comfortable with me, but learning to understand another’s Fingerspelling or sign isn’t really any more difficult than learning to express. In time with patience, communication will come easier. It is the first few steps that are the hardest. You just have to try. If you never try, you will never do. Regardless of the method, communication can happen. Ignoring or pretending I am not there is not helpful. Others will talk about me, but they will not try to engage me. Worse, some people will try to force me to respond by yelling or nudging me. Thankfully, that doesn’t happen often. Most often, I am just invisible. By just trying to communicate in some way even by printing letters with your index finger slowly on my palm, you will get the message across even if clumsily. There is no shame in that, and you will go a long way in helping to include a DeafBlind person.
Truthfully, a simple touch on the shoulder or pat on the hand goes a long way toward helping me to feel less invisible. Touch is more important than words at times, so try that first. Hugs are good, too, after a bit of time or if we know each other. We do have to do some things differently now, and family and loved ones have to, at least at first, consciously think about their activities and objects and how they might affect a DeafBlind person. People can’t just expect us to find a chair on our own in an unfamiliar place, or find the proper bathroom door in the restaurant. We need a little guidance now even with our cane skills and guide dog partners. With effort and in time, family and friends can support us in the ways we need, but allow us to be as independent as possible, too. We certainly do not want you to do everything for us. We want to do for ourselves when we can. We just need you to try to understand how we need you to support us, and we need you to be patient. Most often, we can tell you how you can help us if you will take the time to listen. Especially in the beginning, but even after time, there will be moments when we become frustrated with ourselves and our situations. We might lose our tempers, or throw a small pity party. We need you to be kind and gentle as you try to deal with our frustrations. Most of us try to deal with our dual loss of senses with some dignity, but at times, it can get to the best of us. At times, you might feel frustrated, too. We will be patient with you if you just don’t give up on us. With the supportive attitudes of family and friends, everyone’s frustrations will lessen more quickly. With a little effort toward understanding and communication, the isolation and loneliness can disappear or at least be minimal.
Proper understanding and support from family and friends is the key. DeafBlind have to learn the skills to be independent and to communicate and have access to technology, but none of the skills, technology, or state support can be fully put to use without those close to us reaching out in ways that will support our needs and differences. The dark silence that engulfs us doesn’t have to be a void. We don’t have to be invisible. It just takes true understanding and a little concentrated effort to help release us from isolation.

If you have comments about this topic, you may write a letter in braille or print to Renée Walker, 143 Williamson Dr, Macon, GA 31210; or you may email me at rkwalker@wynfieldca.org. You can also read and comment on my blog at http://www.deafblindhope.wordpress.com.

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This week’s post is the latest column I wrote for the DeafBlind magazine, Good Cheer. I hope you enjoy it, and maybe it will empower you a little bit, too.

TOUCH POINTS
By Renee Walker

As I get more involved in the DeafBlind community around me, I frequently get asked one important question: what do I feel is the most important thing that the DeafBlind need to be independent? That is a major question and needs plenty of thought and consideration. There are so many things to consider because the DeafBlind are scattered around the country and in any one place there are so few individual members. Their environments are drastically different, as well as, their individual hearing and vision issues. How can you answer that question where the most if not all of the people can be helped by the solution? That consideration has been what I have been trying to do before answering these people.

First, I need to derive the answer for myself, and then maybe, I can expand that answer to others. Communication for me is the biggest issue in general. I can now use ASL and braille, so that helps, but you have to have someone to sign with and have to have equipment to write braille or use it to connect with a computer. I set about finding people to interact with and getting the equipment to use braille for various purposes. Neither was easy, and still aren’t. Interpreters were the only ones I could find who were comfortable signing tactually, but there were very few of those. In fact, there was only one medically certified in the local area. The members of the Deaf community around me weren’t comfortable signing tactually either, so I wasn’t going to get any help from there. Equipment was too expensive for my budget, and for various reasons, the state wasn’t willing to give me an answer. The interpreter I found was kind enough to start a campaign of encouraging interpreters in the area to be willing to try tactual. She even brought a few around to meet me trying to encourage them to try. As far as equipment goes, I began putting away as much money as I could to buy my own equipment. In the three years that I have been working to improve my situation, I have managed to find three or four school level interpreters willing to help me for certain events such as work meetings and events such as graduation which I lead as school principal and at a few family events. Of these, none feel comfortable enough to work as a Support Service Provider (SSP) to take me shopping or help me pay bills or make phone calls. I did find one school level interpreter who is willing to do most anything I need. Other than medical interpreting, she is my primary SSP and interpreter who takes me shopping, helps me with personal and business finances, takes me to doctor appointments, and social events. This interpreter and the medical interpreter have worked hard to help the Deaf community in our area include me to some degree which has opened the door for me to have a little bit of a social life. The hearing interpreters still are the main communication point between me and any of the Deaf who still do not feel comfortable enough to actually allow much touch. They will try to “talk” with me and will let me touch for short messages like “hello” and “how are you?”, but will pull back and ask for an interpreter if more in depth conversation is desired. Many of the Deaf seem happy to have me come to the events, but they merely stand back and stare while never attempting to even say hello. I will take what I can get, and am hopeful that with time, it will improve. Other improvements come with the ability to spend about $2000.00 to get the APH Refreshabraille 18 braille display. I am learning to use this with the hearing family, co-workers, and friends in my life. I have a guide dog that helps me to maneuver somewhat independently within an environment. My skills working with my canine partner are considered to be excellent even after several years have passed since our initial training. I also have excellent cane skills, as well. I began using the cane and the dog with a bit more vision and hearing than I have now, but I continuously test my skills and improve them based on the ever-changing physical aspects. This helps me to stay as independent as possible, but I must say that as a totally DeafBlind person I must have some type of sighted or hearing/sighted help in the unknown environments that I find myself in following family, work, and social commitments. Transportation is the first aspect, of course, but to know what is happening around me and to be as safe as possible, I must have someone with me to explain the world around me. Having a small computer and braille display to communicate with hearing/sighted people directly certainly helps when the other person feels comfortable enough to use it, but there is still too much information that I miss out on without a trained SSP. Trained meaning they have been giving enough information about DeafBlindness and helping a DeafBlind person participate as independently as possible in the world that is dominated by sight and sound.

Based upon these experiences, I think I can answer this most important question for myself and expand it to others. My situation being toward the end of the spectrum as severely compromised in the hearing/sighted world by total DeafBlindness and the complexities caused by the simple, rural environment could easily be used as an initial model to understand the needs for a huge population of DeafBlind people with varying physical abilities and environmental settings. Although equipment to support communication, work settings, access to the internet and computer is vitally important to provide more independence and less isolation of DeafBlind individuals, the question is really what resource is needed the most and for the most individuals. The answer to me is fairly clear. Support Service Providers that are well-trained and provided by a well-organized agency to recruit the largest amount of individuals, train in the best methods and give the best information of the needs of DeafBlind individuals, scheduled efficiently to give the most access to as many DeafBlind as need that resource. From rural areas to towns to major metropolises, transportation is an issue from various perspectives. From not having any infrastructure for transportation to having major bus, train, subway features, the DeafBlind often need help in some way to get safely from one place to another. An SSP could provide that from an actual vehicle to guidance in safely using the transportation system of a major city. Equipment such as braille displays, TTY’s, Videophones often still require a DeafBlind person to use a sighted person to help access some web sites, programs, relay centers, etc. An SSP could provide some of that help. The agency set up to provide SSP’s in a general area would continually canvas its DeafBlind population and determine the varying needs and recruit individuals that could help serve these needs and provide the additional training that is specific for supporting a DeafBlind individual.

As I gain the equipment and communication skills I need for accessing the world, I realize that none of these can get me into the world or even accessing the world from this room in which I live completely on my own. I find too many times where I need a physical person to help me access people, things, and situations. At my current state of total DeafBlindness despite my determination and abilities to compensate well, I need a good bit of help from a person, especially when I leave this room and venture into the outside world. When I had a bit more vision and hearing, I needed other people less, but I still needed them if for nothing more than transportation. It is a fact that I don’t apologize for or regret. All people need other people. As a DeafBlind individual, I need other people more. I specifically need people who understand my needs and have the skills to meet my needs.

In advocating for one’s needs, you also have to anticipate certain questions. There is at least one more question that would come to someone’s mind if they didn’t understand my needs or if they had to justify why they should have to accommodate my needs, in this case for a trained SSP. Why can’t I just use family and/or friends? Why does someone specifically need to have some type of training in order to help me? I have family and friends who help me all the time. I appreciate what they are willing to do for me. Problems arise though when I have no one, but family or friends to call on when I need them. First, they are busy with their own lives. They can only give me small amounts of their time and at their convenience. I often miss deadlines or have schedule conflicts that can’t be resolved because there is no one available to help me at the exact times I need them. Careful planning done in advance can help alleviate some of the issues, but all too often there is no help available. Secondly, friends and family do not always know how to help me. My needs are often very unique. I have to be tapped and told using tactual ASL that someone is present and who that someone is. I have to be guided by either grasping the person’s elbow, so I can detect their not so distinct and sudden movements; or I have to command my dog to follow them. Without sight and sound, I cannot negotiate intersections safely even with a guide dog who is trained to protect me, but should not be relied upon to decide when it is safe to cross a street. A sighted person is needed to inform me of the traffic flows and when it is best to cross. I also am particular about the way I want certain things done, and I want to make decisions for myself based on full details of the situation and/or the environment that I am in. I don’t want things done for me. I want to do them after I have been fully apprised of all information. Friends and family mean well, but often help too much, or help too little because they don’t know what to do and are afraid of making a mistake. Either way, they mean well, but they can cause problems for me. One of the biggest problems is that friends and families do not understand how much and what kind of information about the surroundings and the situation that they need to give me. They don’t realize that I want to know not only the important and obvious details like how many people are present and who they are, but also, describing the setting of a room and in general, the tones of voices and body language clues given. Most people use this information daily to decide how to react to a given situation, but aren’t even aware of the fact that they are using all of those details and wouldn’t be able to describe them to a DeafBlind individual who just like them need the information to better understand what is going on around them and decide how they wish to respond. A trained SSP has been given knowledge that helps them know better about what is needed, and although the needs of individual DeafBlind vary, has been given tools to help them quickly ask and evaluate what is needed. This training doesn’t go to the extent of a certified interpreter, of course, but does give skills that better help a DeafBlind individual access the world around them. Overall, the main goal of a trained SSP is to communicate in the DeafBlind individual’s primary mode of communication all the aspects of the surroundings and let the DeafBlind make decisions and interact with the world as independently as possible for that individual. That takes a lot of skill that is best derived by the services offered by a trained SSP. Trained SSP’s just can’t be replaced by caring friends and family no matter how hard they try.

Now I have answered the question for myself and expanded it to a generalized population of DeafBlind individuals and even given some basic arguments to support the justification to those who might require it. I can more confidently answer the people who ask me. Now I ask that you, my readers, do the same. Address this question to yourself and based on your experiences even expand the issue to the wider DeafBlind population as to what might be the most needed resource provided for all DeafBlind individuals. Once done, with confidence, you can speak out on your behalf and other DeafBlind. Take this advocacy seriously, and write, call, or email your government representatives both on the state and federal level. Put your thoughts out there in internet blogs or letters to family, friends, businesses, etc. Let’s educate everyone on what we need now to be more productive citizens as independently as we each can be. We not only should be active participants of our world, but we can be with the right resources.

If you would like to know more about SSP’s, you can visit the American Association for the Deaf-Blind’s website, http://www.aadb.org. If you would like to express your thoughts or questions to me regarding this article, you may contact me at rkwalker@wynfieldca.org, or you may write me at 143 Williamson Dr., Macon, GA 31210. You can also follow my blog at http://www.deafblindhope.wordpress.com.

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