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Touch Points

By Renée K. Walker

A Tribute

Summer has arrived and, along with it, my 25th wedding anniversary and my 50th birthday. I was married 25 years ago on June 22, 1986 just before my 25th birthday (which is on June 26). My husband and I have raised two wonderful boys who are now 30 and 23 years old. They are both out on their own fulfilling dreams and being responsible men of integrity. Each has a wonderful girlfriend who seems to enrich his life. I am very proud of them both. My husband and I have worked together to build a good home and lives that are used to serve our Lord Jesus. That is something I am proud of, too.

It hasn’t always been easy because life is never easy for anyone. Unexpected hurdles and just happenstance can unravel the best of plans made for a life. One must learn to flow with the changes. Among other of life’s normal struggles, we had a few unusual ones thrown in for me. Though profoundly deaf for most of my life, the process was still gradual, and I learned to do a lot with what sound I had. When it was gone, my lip reading skills still allowed me to go about my daily activities seemingly as if I could hear. I found it to be an annoyance at most, but I mostly just never thought about it. It just wasn’t a problem. I was also night blind from an early age, but I just kept bright lights on at night and drove carefully on familiar and short routes if I drove at all. I managed just fine doing what I have always done which is raising a family, teaching, and serving others.

A few years after our wedding, the vision issues decreased rapidly to the point that I could no longer ignore them. As I have said here before, the diagnosis was Retinitis Pigmentosa exhibited as Usher Syndrome Type III. When the vision dimmed, my life drastically changed. My articles here have depicted many of the struggles of being deaf and blind. We have coped as well as we could and, sometimes even risen above expectations. Learning braille, tactual ASL, and assistive technology use has made a chaotic life more ordered. Struggles still prevail, and the world is not always a bright, cheery, or safe place. With my husband by my side and a few very close friends, life is more than just bearable. It is wonderful, and I am living it to the fullest.

All people who are disabled, but especially people who are DeafBlind, need that one person -whether it is a spouse, family member, or good friend – who is there for them daily despite the struggles. Someone who can overlook your frequent moments of frustration over what you can’t do. Someone who can look deep within you, and see the truth. Someone who can dig deep within themselves and know that truth. Someone who will understand that the frustration, irritability, and sometimes even hostility, comes from knowing you can be a burden and you hate it. Someone who can show that it may be a burden at times, but it is always worth it. Someone who works tirelessly to help you access the world, but somehow makes it feel almost effortless. All people need that special someone. A person who is DeafBlind will only thrive if they find that person.

My husband, Scott, is my special someone. He does all of these things and more. I’m sure he often feels unappreciated as life becomes chaotic and stressful, but I do appreciate him. I also respect him because he has truly honored our wedding vows. It is one of the many reasons why I love him. Happy 25th Anniversary, Scott.

I pray that you, my readers, have found that special someone who supports you in your weaknesses and celebrates your strengths. I pray that my DeafBlind friends have, or will find, that special someone who helps them not only survive, but thrive. I also pray that those readers who may not be disabled (but know someone who is disabled) will consider what you may be for that person. Yes, it can be a burden, but the rewards of seeing that person thrive are worth it. God bless these special people.

 

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. You can also check me out at www.facebook.com/reneekwalker.

 

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TOUCH POINTS

By Renée Walker

 

My last column brought a lot of attention from Good Cheer readers and my blog readers where I share this column as well. Feelings of isolation for DeafBlind individuals seem to be very common even if it is intermittent. We all seem to have felt it at some point. I was also pleasantly surprised that I had so many readers interested in my column. I know Good Cheer has a large audience, but it was very nice to learn that you are interested in what I have to say. I appreciate that very much. I will try to continue to discuss topics to which you can relate. Please continue to write me via email, print, or braille. I am very interested in your comments. I learn from you, and we can help each other discover hope for the future.

 

This month’s column is all about easing some of that isolation. There are options out there for DeafBlind individuals, but they are few, and none are perfect. I have discovered an option that I want to present to you. It may not work for you, but since it has helped me, I hoped that it might help a few of you. First, let me tell you that I am not employed by Apple, and I am not being compensated by Apple or American Publishing House for the Blind in any way. I wouldn’t even call myself an Apple supporter. I just look for ways to help myself continue to work and live as fully as I can. Often that is difficult because technology is so expensive, and I can’t get help from government agencies like some. I am glad there are some who can get the training and equipment they need from a government or non-profit organization. For me, that hasn’t been possible, so I have to look for ways to help myself.

 

Apple recently introduced an operating system called Snow Leopard that did what few other companies have ever done before. Apple built in accessibility options throughout their entire operating system making almost all tasks seamless and easy on their Macintosh line of computers. Their screen reader called Voice Over handles voice output and braille output very well. They have also built in options for the Deaf with closed captioning and visual notifications for many tasks such as emails. There is also Zoom for those with low vision. The greatest thing about these accessibility options is that it is included in every computer product sold without purchasing extra equipment and software for your needs. The most you need is a braille display if you require one. There are many braille displays that are compatible with Apple’s Voice Over with more being added all the time. The Voice Over commands are simple and similar to other popular screen readers. The learning curve isn’t as steep as others either with the built-in tutorial that really gets you started. You also don’t need a sighted person to help you configure your Apple computer because when you first boot it up, the system asks you if you need Zoom or vVoice Over. If you have a braille display connected to the computer, the voice is also displayed as text on your braille display. The system will then walk you through the entire configuration, and run the tutorial, if you desire. If  you are comfortable with computers at all, you can’t get it any better than that.

 

Some of you may not be comfortable with computers, or due to your severe losses of vision and hearing, you may be lucky if you have experience with notetakers. Computers may still be a bit more than you think can handle, or you might not be that interested in their many uses. Like many hearing/sighted people, email, text messages, and the occasional browsing of the internet to check shopping sites may be your only interests. If so, Apple has a few other options that can open your world in many ways without the hassles of learning how to use a computer. With the accessibility options built in, the effort can be more like a walk in the park. With the IPhone 4 or IPod Touch, you have fully accessible devices to browse the internet, send and receive SMS messages (text messages), send and receive email, take notes, write documents and read documents, have a face to face conversation with someone else even if they don’t know ASL or braille.  Again, the best part is that you don’t need to pay for extra software and equipment except for a braille display. It is all included in the device that is easily available to anyone regardless of disability issues. With the IPhone 4 or an IPod Touch, you need the help of someone sighted to go in the first time and turn on the screen reader. If you only need the zoom or screen magnification, you might be able to go into the settings and accessibility tabs to turn that on yourself. The sales clerk should be able to help you even if the person didn’t know about it before seeing you. My sales clerk heard me describe what I needed and said that must be in settings. He found it within about five seconds, and my braille display which was already on popped right up with where I was and instructions of how to get out or change accessibility options. I manipulated the buttons and joystick on my APH Refreshabraille 18 finding the web browser, the mail program, and other things as tears of joy streamed down my face. I have no experience really with JAWS, Window Eyes, or any other screen reader. I don’t know those kind of commands at all. With the IPhone 4, I didn’t need that knowledge at all. I just rotated through buttons and text finding what I wanted easily. I set up my email program by myself in the store and got my first email that I could read on my display. I had only just gotten the APH Refreshabraille 18, recently and had only read emails in braille on my MacBook a few times before. Here I was checking email on the first cell phone I have owned since losing my sight almost ten years before. My husband has had to set up my computers before and read everything to me, or I had to put my nose to the screen to read very large fonts. In recent years, I no longer have any residual sight and feeling as if I was disappearing from the world as my sight faded. Here I was setting up this device on my own and getting information. The sales clerk then typed a message to me just using the notes app that comes with the phone that I read on my display, “Hello, my name is Brian. Welcome back to the real world.” I spoke and said, “Hello, Brian. It is good to be back,” laughing and crying at the same time. I had just had my first conversation with another person who didn’t know ASL or through an interpreter in such a very long time. I can’t even describe the joy I felt at that moment.

 

Of course, the IPhone allows me to check and send email, browse the internet, and send text messages with a data plan and a text messaging plan. There are other useful apps available like the WhatsApp Messenger which allows the IPhone 4 or IPod Touch do text messages from smartphone to smartphone for free without needing a messaging plan. You just need a data plan on the IPhone 4 or access to the internet through a wireless connection on either the phone or the IPod Touch. This helps lessen your monthly fees if you can’t afford much. There is also a Color Identification app which is available in the Apple App Store for $.99 that tells you by voice and braille the color of any light source such as the color of your shirt or the color of the leaves on a tree. There are several multi-protocol chat programs, too. These allow you to log in to many of the common chat programs like AIM, Google Talk, IChat, and Yahoo! Messenger with one program app. Palringo is a free one that is totally accessible. There are probably others, as well. These and more powerful apps are being designed every day that can open our worlds to us regardless of how much sight and hearing we may have. The Apple IPad will also be totally accessible with a new update of the OS 4 beginning in November. It already has Voice Over and Zoom for the hearing blind and low vision or Hard of Hearing. In November, the software will be the same as the IPhone 4 and newest IPod Touch allowing braille displays and other features.

 

The world of the DeafBlind is changing quickly. Apple has proven that mainstream technology products can be made accessible with the same off the shelf products that hearing/sighted users enjoy without costing anymore to purchase. With companies like Apple deciding to reach out to those with disabilities they are increasing their market share for certain, but they are doing wonders by bringing the world back to those of us. Now I can explore that world with my IPhone 4’s GPS and maps. I will check back in with you next time. Well, if I don’t get too busy exploring…

 

 

If you have comments or questions about this article, you can email me at rkwalker@wynfieldca.org, or write me in braille or print at 143 Williamson Dr., Macon, GA 31210. Check my blog also at http://www.deafblindhope.wordpress.com. I am also on Facebook as Renée K. Walker, too, if you want to become friends.

 

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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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Touch Points

By Renée Walker

How many of us have had problems getting what we need due to communication issues? Despite laws that are in place to help equalize education, entertainment, legal, and medical worlds, how many of us still have trouble accessing the world around us? In this rural area that I live, I have encountered enough problems to last me two lifetimes. Growing up hard of hearing as a child to deaf as a teen and young adult, I thought I knew plenty about the problems caused by the inability to fully communicate. When my vision problems became an issue that couldn’t be ignored or overlooked, I just didn’t realize what I was about to face. Coping with the loss of vision and eventually independence was hard enough. I just didn’t know that I would have a struggle just to see a doctor and be able to understand and act on my own behalf.

I think my first clue was that people didn’t know what a guide dog was at all. Stores, banks, schools, churches, and malls all refused to let me enter with my guide dog. It was a repeated effort of education with the help of my guide dog school, Southeastern Guide Dogs, Inc. that finally seemed to ease the travel issues over the first couple of years. As I learned to be more independent through travel and then after gaining more control from study at Helen Keller National Center, I found that I needed to face some serious health issues. I had been seeing doctors before for my chronic issues, but now things had changed. Needing a tactual interpreter to communicate my health problems with a physician became an absolute necessity. None of my preparation learning about communication cards, interpreting services, getting used to discussing private issues through a stranger helped me to cope with the shock that the medical agencies here didn’t seem to know anything about interpreters much less the American Disabilities Act. I tried to educate each doctor with a copy of the law and a list of interpreting agencies for the area which weren’t many and only a couple of interpreters from those agencies comfortable enough to agree to tactual interpreting. Every doctor’s office I had and new ones that I tried to go to for new or worsening symptoms or to replace doctors were now refusing to provide me with an interpreter. My procedure was to call and ask for an appointment. I didn’t have a problem getting an appointment, but after arranging a day and time, I would then state that I needed a tactual interpreter. Many times I had to explain what an interpreter did and then what a tactual interpreter did. I would explain how they went about finding one and requesting the service. I told them how they were responsible for the fees, but ADA law allowed them to take it off under operating expenses or overhead. I always offered to mail or fax the information to them and mentioned telephone numbers of agencies that they could call and ask questions. I also referred them to the website for the National Association for the Deaf (NAD). I would then say you can call me back, or I will call you back when you have had time to research your responsibilities under the law. I can’t remember a single one calling me back first. I would call them and ask again. This would usually go on for weeks before they would finally say, “We won’t provide an interpreter for you.” My initial contacts with NAD a year and a half ago resulted in nothing. They wouldn’t return my emails even though I knew the email address was correct. A few months ago, I tried again. I was pleased when someone did respond and was very helpful. They made phone calls to all the doctors’ office in question and were amazed how adamant most were in not caring if they were in violation of law. NAD sent letters from their attorney informing them of their responsibilities. One doctor’s office relented and now provides me an interpreter. The others still refused to do so. NAD felt the situation was bigger than they could handle and put me in touch with a group of attorneys at an advocacy center that is now in helping me with my problems. NAD continues to follow the situation. My current attorney has repeated the initial steps of phone calls and letters to try and solve the situation with the least amount of litigation as possible. The doctors’ offices in question have still refused to provide an interpreter for my appointments. The center is still acting on my behalf. I am still working to better educate the medical agencies in my area on the needs of deaf and deafblind patients regarding communication issues and their rights to be informed and make decisions. The fight goes on as my medical issues continue to deteriorate.

You might now ask if I contacted local and/or state agencies and private organizations for the deaf on this issue. I contacted them before I contacted NAD the first time. Most of my attempts to call were not returned. At one agency, I was told that in this area the deaf usually choose to use family members and friends who could sign or otherwise help them to communicate. The doctors’ offices in the area have come to expect this. This organization and others who mentioned similar reasoning felt that it was their responsibility to support what the Deaf community desired. I think back to when I could still see, and I went to the doctors without help. It wasn’t always easy because I had to keep asking the staff to look at me or repeat, but I didn’t know ASL. I had heard of ADA, but only knew about wheelchair ramps, braille signs, and hearing aid compatible phones. That was because I saw them around me in the environment and knew it was because of the ADA law. No one ever offered to explain that it meant more than that including the deaf services area of Vocational Rehabilitation Services that helped me get into college or later go to Helen Keller. Would I have requested accommodations if I had been informed? I don’t know, but it would have been nice to have had the choice to consider.

A final aspect to this situation that I would like to pose is the argument that the Deaf and some DeafBlind would rather use family members and friends. Of course, that is their choice, and I would not want to force anyone to do anything that would make one feel uncomfortable. Again, though, I would want to make sure that choice is an informed one. It has been shown that untrained family members or friends often do not understand the medical terminology and processes well enough to accurately translate to ASL or convey it most any other way. They often are too close to the patient and wish to shield them from pain and fear if the news is negative. Others may see the patient as more of a child and try to make the decisions for the patient. Or, often it is simply a matter of feeling overwhelmed with the information being given and trying to convey it to the patient that friend or family member resorts to, “I will tell you everything later”. If the patient is fully aware of these issues and is ok with that then fine, but education should be in place to make them aware of the possibilities and help the family members and friends be aware, too. Most of this would not be a conscious attempt to deceive just blinded my love and concern. In addition, the other side to this coin is the doctors’ offices are at risk as well. There have been cases of a patient making appointments and not requesting accommodations for communications such as for an interpreter and then suing the doctor’s office for not providing one. The patients win the case because the ADA law is clear. Having a policy of asking a deaf or deafblind patient if there are any communications issues and any modifications that they need and providing them upon that request could help protect them from such possible litigation. I have heard and read many opinions on all sides of this issue regarding providing interpreters in medical settings. The ADA law exists to protect deaf rights, and it was written to prevent overdue hardship on medical providers. Everyone needs to educate themselves and others. Litigation should not be needed for deaf and deafblind to receive proper medical care and understand that care given. The patient should not also have to fear that the medical provider might retaliate in poor care once forced to provide the accommodations for communication.

Advocacy is the key here with education and awareness being the preferred method. The law is there for us to use if needed. No one should have to have their medical issues ignored or medical decisions forced on them. We all need to work together on this and other issues that face us. Since there have been others asking about similar issues, I wanted to share my experiences in hopes of helping others.

If you have questions or comments, you may email me at rkwalker@wynfieldca.org or write me in braille at 143 Williamson Dr., Macon, GA 31210.

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I am Associate Editor of Good Cheer, the international DeafBlind magazine. I write a column called Touch Points in each issue. Here I will post my columns after they are published in Good Cheer.

Touch Points

By Renée Walker

A Day at the Movies

 I had looked forward to this day for several months, since I had heard the opening day announcement. Even as old as I am, I love the stories about a young boy whose mother gave her life protecting his. I had read many of the books in print until my eyes finally gave out. I then began learning braille and finding these books printed in braille gave me the incentive to work hard. Going to see the movie based on the 6th book, Harry Potter and the Deathly Hallows, was going to be difficult at best. I knew that I wouldn’t understand much with almost no hearing even with an FM system and a very small peripheral field and blurry acuity. I really wanted to try though because I had enjoyed the first couple of movies with my vision. We searched for a theater that provided closed captions or descriptive audio. I had never seen any of this technology and wasn’t quite sure how it worked, but I was hopeful. We finally found a theater that provided both of those technologies. The theater was almost a hundred miles away in South Atlanta and called AMC Southlake Pavilion. My wonderful husband agreed to take off work to take me. We didn’t understand how to figure out what movie was currently shown using the technology or times or anything actually, so we just picked a day and drove up there early in the morning expecting to have to get tickets for a particular showing and go shopping until time. For me, it was worth it.

The day finally arrived. We loaded up Joey and ourselves and drove the miles to the theater. We arrived to find that the Harry Potter movie was not available with the technology at that time. I was disappointed, but I kept my chin up. My husband talked with the manager, Janine, who carefully explained to him the workings of the web site and the technology in general, so we could plan better next time. Since Harry Potter would not be scheduled for the accessible theater, we decided to come back later that morning and see it anyway. I wasn’t interested in the movie playing in the accessible theater. I don’t know what all my husband talked about with Janine, since I couldn’t understand anything and Scott doesn’t know sign except for trying to learning Fingerspelling. Later, he said that he had just mentioned how I missed the movies. Janine got on the phone and talked to someone for a few minutes finally saying, tell someone to swap out the current movie in the accessible theater for Harry Potter. Scott turned to me and explained the gist of what was happening. My heart nearly jumped out of my chest with excitement. I tried hard to fight the tears welling up in my eyes, but the tears betrayed my emotions as a tear rolled down my cheeks. Scott and Janine looked at me. Scott asked if I was ok. I said happy is all. Scott told Janine how so much has been a fight since I lost my sight as well as being deaf. Everything from taking my guide dog into restaurants to seeing doctors with interpreters to getting accessible technology to help me work and communicate has been a battle. It was a wonderful feeling to have someone be so nice to me. I thanked Janine, and she touched my shoulder gently. It was easy to tell without sight and sound that she was saying she was so glad to help me. Joey went straight to her and wagged his tail. Janine leaned down, and he slurped his tongue across her face. He doesn’t do that while working usually. Scott was quickly apologizing, but Janine said she loved it, and she rubbed Joey’s ears.

A short time later, we were sitting in our movie chairs with popcorn loaded with butter and cokes sitting in the arms’ cup holders. I had one cup holder filled with a flexible stand with a tinted but see through piece of plastic attached extending in front of my face. I also had the descriptive audio headphones. As the movie started, it took a few moments to adjust the plastic just right for me to see the captions with my field of vision and to get the headset adjusted. It took a few more to figure a way to shift from the screen to the captions to keep up with the action. I finally decided to turn on my FM because the headset wasn’t helping at all. My FM had never worked to pick up anything in my area theaters, but I figured it wouldn’t hurt to try since I was some place new. I touched the buttons to turn the FM on and press the correct order to change the frequency when suddenly noise. I actually jumped. I couldn’t quite understand words, but I kept concentrating until a few words began to come through the crackles. It was obviously the description of what was going on the screen.  I relaxed and focused my eyes on the plastic screen and scanned until I found the captions. By concentrating on the noise in my head and the fuzzy letters forming in front of me, I actually began to get the story. Of course, it helped to have read the story before. I was totally amazed. I was actually enjoying a movie for the first time in ten years thanks to some wonderful technology.

As we left the theater, I was walking on air happier than I have been in a while. Janine met us out front and asked how I enjoyed the movie, but said is your face evidence of your enjoyment? Scott translated, and I nearly jumped up and down signing and speaking, “Yes! Yes!” I thanked her again, and she said, “No problem. You and Joey have just made my day! It is so good that the equipment really helps to bring a little fun to people.” We left, and I thanked God for my blessings. It is nice to know that this journey with DeafBlindness won’t always be full of battles.

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