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Posts Tagged ‘DeafBlind DeafBlind Hope’


I seldom get truly upset these days. Age mellows you, I guess. The last several weeks, though, I have been increasingly frustrated on Sunday mornings. I have tried several different time frames from early morning to early afternoon on various local stations and satellite looking for Christian worship services that are closed captioned. During the week, you can find many Christian network programs and even on regular network programs at certain times that involve Bible teaching and Christian lifestyle programs. I love these, but I also want to worship like I did at Church most of my life. Yes, I can worship in many different ways, in different places, and at different times. I still want to watch a good Church program, though, especially on Sunday. For many years, I have watched a service at a local church that I used to attend. For financial reasons they changed networks recently. I watched the program on the new station this Sunday. I couldn’t understand a thing. I sat close, but I couldn’t find the very fuzzy words at all. I sat and watched the grayish and reddish screen flicker and hoped that I would at least see captions when the pastor spoke. It never happened. I was disappointed.

Then I was angry. Closed captioning is very important to Deaf and Hard of Hearing people. Even I use it by reading very close. No, I don’t get everything, but I get enough. With Closed Captioning, I can watch TV shows and movies that others are watching and talking about which helps me to feel connected. More importantly, with Closed Captioning, I can learn from others about faith, love, and the ways to a better life through Christ. Closed Captioning is necessary for accessibility. The Deaf need the accessibility to the Hearing world. They need, I need, the access to the message of the Bible in this way, as well as the others I use. I have looked and found only Charles Stanley out of Atlanta who has partial captioning when the pastor speaks. The only full captions I have found have been on the LDS channel. They provide captions for the songs, message, and everything. I really prefer that. The words of the hymns and contemporary songs have a message themselves. I should be able to learn from the music, too. The problem with that is I don’t agree with the LDS, so that isn’t an option for me. It is a shame that other Christian denominations don’t seem to have the compassion for others as the LDS do, though.

Why does the Church not see the need for this? Too many pastors are saying it is because of the economy. Let me note here that Closed Captioning equipment and therefore, services, too, have been decreasing in costs in recent years, so lack of money can’t really be an excuse. Even if it is money, if Believers truly believed their Bibles, and if Believers truly lived the words they read, then the economic situation wouldn’t matter. Believers need to present the need to God, and then believe the word He promised to provide for all our needs. Truly, though, I see they have money for the things they really want to do and give to most often. Many brag of what they send to far, remote places to spread the Gospel. I think that is wonderful, but if there are those who are needy within your own back yard or even in your own house, why not put a priority there before you venture to far mission fields?

The Church in America, I believe, is failing in its mission. It isn’t about doing the Father’s business. All too often it has become its own business seeking money for its own agenda by catering to making people feel good. It isn’t about speaking the Truth. This shows as there isn’t enough faith to bring in the resources and to serve its members’ needs. Love is short when the faith is lacking. Wake up, Church!

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Touch Points
By Renée K. Walker
Spring is here, and it has come in roaring for the South where I live. We have experienced the deadliest day of tornadoes since the depression. F3 and F4 tornadoes touched down within just a few miles of my home. Other tornadoes just as strong or stronger touched down in my state and surrounding states killing hundreds. I am so thankful that my family and I are safe. I also pray for my neighbors and others in the South whose families weren’t so fortunate. My topic of choice before the storm and even more so after has been of safety. I have experienced some incidents recently and in the past that have frightened me or at least unnerved this former law enforcement and prison teacher which at one time was very hard to do. Being DeafBlind is enough, of course, to shake the steel nerves of most anyone, but there should be some feeling of safety in one’s surroundings.

As a teacher in juvenile and adult facilities, I have been in very dangerous situations before and even had my life threatened on more than one occasion. The training I received helped me to stay calm and do my job following certain protocols to maintain safety for staff and clients of the facilities. If you fell apart, you did it well after the fact, but you learn to deal with the adrenaline and often become a little addicted to it. Even staring down the barrel of gun didn’t have me shivering in fear when I had a student with me several years ago. The fact that I didn’t react with such uncontrollable fear actually became a negative during the man’s trial because defense attorneys could twist that to reduce the man’s charges and eventually his sentence terms. But becoming Deaf and Blind, my steel-hardened nerves melted quickly, and I suffered panic attacks for the first several years. Even when I was relatively calm, my personality was changed to a more withdrawn and fearful demeanor. Though deaf for many years, the vision change was subtle and slow until the very end when I first realized the loss by a drastic and sudden loss leaving me in a dark and silent world. My fear and personality changes were understandable. The changes were further heightened by the reactions of those I would meet in my new world. People I knew and loved often withdrew or left completely unable to handle the changes in our relationship. Strangers either avoided me or drew close to see the novelty, and a few times sought to deceive or even harm.
I have had cashiers steal my money. People on the street come up to me and wave their hands up close in my face, or if they notice that I sign or can’t understand that someone is speaking to me, come up near me and scream or make a loud noise. People can be very weird. These can be annoying if I even notice them, but I am not particularly frightened of these strange people. The ones that frightened me are like the group of young children who spotted us or actually my guide dog in this case and began to run circles around me screaming. I was later told they were screaming about the “bad dog” and “Get the mean dog out of here.” They ran around us and would swoop in kicking my dog or me. I was punched in the back. My dog was kicked and punched on his back and in his side. These were just children ranging in age from about 4 to 8, but children can be quite strong. Adults around us did nothing and that included store personnel. I kept screaming for someone to grab their kids. No one moved. No one came to my rescue. My husband was with me, but we were raising another guide dog puppy at the time, and he had Anchor. Anchor had been showing signs of really needing to get outside, so my husband was trying to do that thinking I was very close behind him. When my husband realized I wasn’t there, he put Anchor in his kennel in the van and ran back to me where I was doing my best to calm my frightened guide and move out of the store. My husband spoke firmly to the children who ran off towards an adult about 10 feet away who seemed to be glaring at him. My husband didn’t give the adult time to say or do anything and led me quickly out of the store. My guide was traumatized and for several months I couldn’t work him because if children came near he panicked. Southeastern Guide Dogs, where I had gotten the dog, worked tirelessly trying to help me get my beloved dog back to working state. Little Joe is now fine, but it took a lot of work from both of us.
In the years since, I have had other incidents happen, too. Once, on vacation in Florida, my life was verbally threatened at a hotel by several people who took offense to my dog.

It isn’t all about my dog, either. A few years ago, someone rang my doorbell. I was expecting a friend at that time, so I opened the door. I normally block the door with my body because I had four dogs at the time and one of them tends to bite when people arrive for some reason. I felt a shove of the door into my shoulder as I instinctively resisted realizing my friend wouldn’t do that. My dogs reacted loudly and physically and within seconds the shoving stopped, and I slammed the door shut. Was that someone trying to harm me or just get my attention in the wrong way? I really didn’t know. I couldn’t call the sheriff because I was totally deaf at the time. It happened very quickly, so I didn’t have a lot of time to get very scared. I was able to convince myself afterwards that it was no big deal. After that, we invested in an emergency call system with 24/7 monitoring for other health reasons. I used it just a few months ago when the doorbell rang, and I wasn’t expecting anyone. Since the first incident, I had learned to not open the door at all if I wasn’t expecting someone. I also ask all my visitors to email or text me as they arrive or develop another signal with them to let me know the person is who I am expecting. When this person or persons didn’t leave quickly and I noticed the dogs acting like people were in the back of the house, I used my system. Sheriff was called and arrived. It turned out to be a friend, but a friend I hadn’t seen in several years and was unaware of my health changes. The sheriff’s deputy actually stated that I should be in an institution or not allowed to ever be alone at the very least. That was humiliating. Getting an emergency call system had been tough for me, since I felt elderly and incompetent, but it was useful, so you learn to deal with it. Now I was being told that I shouldn’t be taking care of myself at all and possibly locked away.

Just a few weeks ago, a trip to a local college to walk with my guide dog and another family pet took a bit of a frightening turn. We were walking across a large field section of the campus. Due to construction, we were away from the usual path, but it was an easy field to walk. My husband was in front with our pet. I was behind with Little Joe. Suddenly Little Joe came to a dead stop. I stopped, but I couldn’t find any immediate obstacles. Little Joe didn’t try to move me in another direction. He just stood perfectly still. All of a sudden, I felt Little Joe move into me hard and then jump to the side and back of me. I also felt his body shiver with fear. This scared me considerably, since I had no way of knowing what was happening or about to happen. My husband reached for me and pulled me further to the side as I explained that something must have hit and scared Little Joe. My husband explained that a woman had approached us walking quickly in a power walk method carrying a large, broken tree branch like a walking stick. Instead of going around us, she plowed forward straight into us and begin swinging the large branch side to side very fast and loudly and forcefully saying, “Out of my way; Out of my way.” In the process, she had hit little Joe on the backside with the stick. I was frightened and angry, but I had no recourse as she just walked away ignoring our calls.

These incidents and others over the years have made me wary when I am out, but I have continued to try to explore further into my dark and silent world. I don’t want to be so frightened that I sit in my safe chair in my little room at home. I want to live my life and live it well. My husband and some friends worry about me and want to know how to handle these situations, but how? You don’t expect people to act this way, and you certainly don’t want to assume that everyone is out to get you and bully people who venture near me. Not only would that be wrong, but it would probably result in lawsuits or arrests. Now we remain on guard when out, but we have no idea what we really should do to handle these situations. We just will handle them as best we can as the situations arise being ever watchful. Life is stressful and even frightening in this dark and silent world just fearing the unknown objects, drop offs, and barriers. I should be able to find safe and helpful hands in the dark, don’t you think?

Yes, for every person that has tried to drive me into seclusion, there are dozens of others who shower Little Joe and me with blessings every day. Those are the people that keep me moving forward in strength through the dark silence.

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 http://www.facebook.com/reneekwalker.

Published in Spring 2011 edition of the Good Cheer magazine, an international magazine for people who are DeafBlind by people who are DeafBlind.

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This past weekend on Sunday I went geocaching. Geocaching is a hobby where you use a GPS to find your way to a cache or hidden box. Geocaches can be found in wooded and urban areas. The location doesn’t matter. The box itself is sometimes empty except for a logbook to sign to show you found it. Sometimes there are items inside that you can choose from as a souvenir and leave one of your own in its place. The fun is in the finding of the little hidden treasure and exploring the outside world. There are a few million geocachers around the world, so this is a very popular sport. I haven’t done it since I lost my sight, but I was really missing it. I have been wanting to try it again as I have been gaining confidence exploring the world around me again. Question was how to make it accessible in my new circumstances.

As the popular quip goes, there is an  app for that. The IPhone 4 as as an app for geocaching. With the accessibility of the IPhone,  I can access a lot of the information, though not all, with my braille display. If the app developers  and cache owners provided a little text information about where their caches are it would be even better. We found many caches that were within a short distance from our house including one that is within walking distance.

We chose the sunny day of Sunday out of whim and took off to see what we could find. One was at the beginning of a new subdivision that used to be a wooded and open field area just a year or so ago. They are now doing construction right at the cache site, so my husband acting as my Support Services Provider, SSP, for the day decided that Little Joe and I needed to wait on the sidewalk. He found the cache right about where the GPS said it would be, but rain and construction had caused deep eroded ruts and construction objects like iron pipes prevented me from safely getting to it. My husband took a picture, showed me the cache that consisting of a slightly soggy logbook in a fishing tackle box, and then used the phone’s app to record our visit to the cache including a picture uploaded to the international geocaching web site. After returning the cache to its hiding spot, we then headed for the next cache.

The next one named “Bridge over the River Kwai” in reference to a bridge at the site and an old Vietnam movie by the name had steeper and wooded terrain. Joey amply led me around ruts and rocks and down the steep hill safely to the bridge over a creek rushing fast from the recent rains. We crossed the bridge, and Joey helped me navigate around a huge boulder about the size of some small cars. Behind the rock, Joey helped me find a hollowed out tree stump. I felt around with Scott and Joey’s eyes watching for my safety until I found a red piece of cloth with string attached to a waterproof container about the size of a small camera bag. Scott signed to me that the container was army green with a label stating, “Official Geocache. Please do not remove.” I opened it up to find a logbook and several types of little toys including a ball and some sticky-feeling plastic figures. Scott said the sticky feeling was normal. I remember making squishy, soft plastic toys with a kit as a kid. Scott said that was kind of what these were. We took pictures of Joey and me with the cache and then used the app again to register that we found it, and then I placed the cache back into its hiding spot myself. I have to admit that I was thrilled at having made the find and having traversed the terrain with Joey to get to the spot.

The third one we went to was called, “Does this Cache Make by Bass look Big” in reference to the location in the woods next to Bass Pro, the big fishing and hunting store franchise. It was in the woods at the end of a road where the pavement just goes off and stops in preparation for possible shopping center expansion. There was a huge hill. Scott wasn’t sure if I could make it down without falling. Well, I was excited, so I showed him that I am not too old to go down a hill the best way- sliding down on my butt! I slid somewhat fast, but it was fun and exhilarating. I made it to the bottom with Joey happily jumping behind me. The only damage was a green and slightly red clay mark on the seat of my pants. One of which I haven’t had since I was a kid. I felt remarkably young again. I wasn’t going to ruin things by thinking about how I might feel the next day, though. We looked, but where it seems the cache is was not a good place that day. There was a little drop off and a creek with a little climb up to the next bank. I could do it probably since I was just a few years ago hiking and backpacking with residual sight. The problem was that the recent rains made it too muddy to try that day.

We will go back when the ground has dried out, but I was just thrilled to be doing something so active and as independently as I possible could do. Yes, I need an SSP now, and I won’t be able to actually get to every cache myself, but this is a hobby done best with friends and family anyway. With some more accessible and safe locations, I wonder if other blind and deafblind would like to do this fun and healthy activity.

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SAT ® and ACT® preparation is on anyone’s mind if they plan to go to college. Most of our curriculums will help prepare you for the writing, verbal, and math portions, but one section tends to stump a lot of us, and that is vocabulary. Where do they come up with some of those words? Finding a good resource that is interesting is the key. If you are blind or deafblind, the resources are very limited, as well. VocabAhead may just be the choice for you and your students with its “entertaining and effortless vocabulary building solution”.

VocabAhead’s SAT Vocabulary: Cartoons, Videos, and MP3s is a simple, but handy study aid for any trying to bone up on their vocabulary. The main product of this company is a book. I will describe it first for those blind and deafblind with some residual sight for use with a CCTV. Each page covers one word. The page lists the correct spelling of the word and its part of speech. It then lists the definition along with a humorous cartoon illustrating the word’s meaning. The cartoon has two to three different sentences describing the cartoon using the word or using the word appropriately in additional example sentences. The page concludes with a short list of synonyms and antonyms for the word. There are 30 units which group words in loose categories of similarity. At the end of the unit, a review exercise is provided of matching and fill-in-the blank practice of the words in that unit. Answers are included in the back of the book. This is a great way to build visual connections to easily learn and reinforce that learning.

Visual learning is not the only style supported by this little aid. You can download the narrations of each page on MP3 files to your favorite player and listen and learn on-the-go. This is great for blind and auditory learners and those with reading difficulties and dyslexia. There are also videos to download that will allow you to take the book with you in a digital fashion on your IPod, IPhone, and IPad which for some students with special needs is a great plus. The narrations of the videos are not closed captioned, but the deaf will find it useful as the book is if they prefer apps for learning. Some autistics are learning to use the IDevices to spur their learning and reinforce their memory and attention spans. The audio files and the videos are free for download of their website. I also hope the team will add a feature. That is a pronunciation guide for the word. Some students need that visual key to help them with learning to pronounce words. Regardless, this is a perfectly priced study aid for vocabulary improvement.

I must add a caution to parents and to adults who are wary of the content they put into their minds. There are some cartoon and sentence examples that some may consider inappropriate for some readers.  One sentence for anathema describes a girl using voo-doo to put a curse on her boyfriend. A cartoon for the word carnal shows a busty woman. Each parent or adult needs to decide if the material presented is suitable for their student’s use or even their own. This reviewer would never ask you to present material for use that you feel is inappropriate. I make note of these possible things when I can to help you make an informed decision about the product.

To my great surprise, I found on their website that an IPhone/IPod app is available for this study aid. Being Deaf and Blind, I was happy to see a lite or free version available for testing. That means this review will also go on my DeafBlind Hope blog to help DeafBlind people know what can help them. To add to my excitement, I found they did a great job making the app accessible to braille output for the most part. Everything in the “Study Words” section works fine with braille. The flash cards work well too except for the tap to hint section which can be selected on a braille display, but because the hint is only an image, the braille display goes blank. This would definitely confuse a person needing the braille. They might not know what to do next or think the program closed or locked up. I suggest that they add a text hint here such as a synonym or a sentence using the word or a text description of the image that would help with the word. In the quiz section, the main page is accessible. The buttons work and even the dial a word section which is more of a graphic is accessible. You can scroll through the list to see which words will be on the list and change the list from the “don’t know yet” list and the “mastered” list for continued practice on all the words. Once you click the start quiz button and change to the first word on the test, the app loses it on accessibility. The home and back button work fine. You also can see which word you are being quizzed on next, but the multiple check boxes of possible definition answers only shows on the braille display as “btn” which means button.  You cannot read what the choice is at all. You can check with the select button on the display, but you don’t get any response as to right or wrong as you should. You only get the text “dmd btn” which is demand button. I also couldn’t figure out how to move forward in the quiz by braille display either. You do a one finger flick on the touch screen. That isn’t always easily understood by people who are totally deaf and blind, so a next button should be added. These are easy fixes for the app developers, though. I am hopeful that this will be updated soon because I am sure the developers would like to make their app fully accessible. I am going to email them with my suggestions as their app boldly asks for which is a positive point for the developers. They obviously want to get suggestions for improvement. When it is, I can tell you that the app will be worth buying even at $9.99 if you are blind or deafblind because it covers 1000 words. It is already a great app for other users including some special needs students.

 

Between the book, the audio files, the video files, and the IPhone/IPod app, VocabAhead SAT Vocabulary: Cartoons, Videos, and MP3s should have everyone covered. To find out more, go to http://vocabahead.com. This neat study aid can also be purchased easily at Amazon.com for $12.95 in book form. A DVD version is also available for $24.99. This could be a fun way to a higher SAT® or ACT® score or just to get a little smarter.

 

I was provided a free product to write this review. I was not compensated in any other way. The opinion expressed here is entirely my own.

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Touch Points

By Renée K. Walker

To be Allowed to Understand

Time for another touch point, and accessibility is still on my mind. Accessible technology is still a big interest, but this time I am thinking more about events and activities. I sit in this room in this chair at my computer trying to access the world so much that I really want to get out sometimes and do something. I did that recently and wanted to share how it went and how easy it can be if event organizers and businesses will just take the time to think about accessibility.

With the holidays approaching with gifts to buy and new resolutions to make, I decided to use some of my saved money to buy myself a gift, and hopefully, keep a New Year’s resolution to get active again. I joined a gym after finding a Support Services Provider (SSP) who could sign; I approached the largest gym facility here that is also a division of a medical facility to apply for membership. The first obstacle was to convince them that they had the responsibility to provide a qualified interpreter for some of my visits such as the first meeting and meetings with a personal trainer. It took a bit of effort, but after education and effort, an interpreter was provided. My first visit was good, though tense at first, as we initially went back and forth on how to best serve me. The facility requires someone to be with me at all times, but I in agreement with that. I am becoming more and more independent, but I still have anxiety issues when out in the public alone. Communication with staff was my biggest concern. Anytime I meet with my personal trainer, I get a qualified interpreter as mandated by the ADA law which specifically mentions gym facilities. For most days, I now can get around independently even if someone else is not with me because we took plenty of time with staff initially to orient me to every inch of the building and its facilities. The staff didn’t quite understand that at first, but they helped me graciously and found it was quite easy on their part. An SSP will provide the means for communication otherwise, if the need arises. I also opted to have massage therapy (my favorite part, of course) provided, too. This was the part that I was most worried about. Apart from the apprehension one might feel with the touching initially, I was most concerned about communication because it isn’t a setting that they want another person in the room due to privacy concerns. The therapist works to keep you covered at all times, but as you move from front to back, someone sitting lower and to the side of you might see more than you want them, too. I understand that, but I was concerned with how the therapist would communicate or even if the therapist would be willing, since it has to all be done tactually. With the help of my interpreter, we developed a set of signs both ASL and made up signals that were easy for both the therapist to remember and me to understand. The therapist was perfectly willing, and the first session went very well. I loved the massage. My feeling of insecurity in regards to the touching quickly dissipated due to the procedures and professionalism of the therapist, and my body never felt so relaxed. I highly recommend it for anyone, but especially DeafBlind people who live stressful lives just because they are DeafBlind. I can say that I have been several times now to exercise and gotten one massage. Due to the understanding of the staff and my SSP, I will be able to keep this New Year’s resolution with the best Christmas present that I gave to myself.

Now my new experiences didn’t end with the gym. I decided that I wanted to experience some Christmas celebration again other than my own at- home celebration. First, I attended the local replica and live play called “Walk through Bethlehem” presented by a local church. This church already provides interpreting services for the deaf members of their congregation for church and other services including this activity. This year they provided two tactual interpreters to help take me through along with my family. The interpreters were wonderful and really helped me understand what was going on. I had attended this event several years ago as a sighted person who couldn’t hear, but I also couldn’t sign. I thought I understood everything. I know now that there was a lot of subtle and inspiring information in the various dialogues that I had totally missed without the ASL knowledge and interpreting. This year I also was provided tactile access to the event making the experience even more enjoyable and fulfilling. I was allowed to touch the fabricated city walls, Roman soldiers’ uniforms, bread and other foods, and the baby Jesus who was to my surprise a living child kicking his little feet in the manger. I touched the nose of a camel and felt the heat of an open fire. The actors made the extra effort to provide this access to me, not just my interpreters. Many told me later that they had never done anything like that before, but they thoroughly enjoyed the experience and learned a lot from it. I know that their effort was extremely beneficial to me and much appreciated.

My next event wasn’t as accessible as these other experiences, though. I attended my church’s Christmas Eve service which included music, message, and a live nativity. I knew before I went that accessibility would not be present. My church provides an interpreter for the Deaf for a Sunday morning service, and my Deaf friends copy the interpreter’s signs to me tactually. Sunday morning service is the only time my church considers providing access to their events for their Deaf members. I think they care, but I don’t think they fully understand the needs of me and other Deaf members. I attended because my hearing family members would enjoy the service as a part of our Christmas activities and as another means of keeping Christ the center of our celebrations which is important to us. I could feel the music from the full choir, orchestra, and band, but I had no other means to understand the message or experience the live nativity. My husband tried to help me get close to the nativity to help him at least better describe the scenario and possibly allow me to ask to touch what I could, but no one would let us even get close as they crowded to see for themselves. He couldn’t even see the actors or scenery to describe them to me. Of course, I knew this beforehand, so I did not complain, nor am I complaining now. My family enjoyed the event and worshipped through song, prayer, and message. I worshipped through the feel of the music and in my own thoughts and prayers. More importantly, I just enjoyed being there to share it with my family as opposed to waiting at home alone. Sometimes that is enough in light of the struggles of being DeafBlind.

These new experiences just emphasize to me the importance of accessibility. I think more understanding and a willingness to try would provide us all with more meaningful experiences and more fulfilled lives. I will do my best to continue to speak out in love whenever I can. I hope you, my readers, will do the same. Together, we can build a bridge of love which will improve the lives of all.

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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Many people have asked how can they help WCA’s DeafBlind Hope program when the economy is just too tough for them to donate money. Well, there are many ways, but a few come instantly to mind. You can search the internet for us, shop online for us, or clip coupons for us. You simply do what you do every day, but you can do it to help DeafBlind Hope.

Instead of Googling, as it has begun to be called, you can search using YaHoo!’s GoodSearch engine. You search the internet, and GoodSearch donates to DeafBlind Hope. Go to GoodSearch.com, and choose Wynfield Christian Academy as your charity. Then search away. WCA’s DeafBlind Hope gets funds for every search you to do. You can also download a toolbar for GoodSearch for Firefox or Internet Explorer to make your searching more convenient. Get your knowledge on by searching the internet for WCA’s DeafBlind Hope.

If you like to shop online, you can find many of your favorite stores on GoodShop.com. If you shop in your favorite store through GoodShop, the store will donate a percentage of your purchase to Wynfield Christian Academy. Just go to Goodshop.com and click on your favorite store. You are then sent to your store’s website, but with a code attached to your entry that notifies the store that you are shopping for WCA. Shopping online is easier and often cheaper than in a brick and mortar store. Now do your shopping online, and help a DeafBlind Hope client live more independently.

If you don’t search the internet much or shop online, you can also help by just going to the grocery store. We all have to go to the grocery store some time. WCA is enrolled in two programs from companies such as Campbell’s and Pillsbury where they will donate to WCA if you buy their products. You simply clip and save coupons from these products. After you have saved a few coupons, mail them to WCA. We sort them and redeem them for cash and merchandise. The two programs are Labels for Education sponsored by Campbell’s companies and Box tops 4 Education sponsored by Pillsbury and General Mills companies. You can find out more from their web sites: Labels for Education and Box Tops 4 Education. I understand that many of you, like me, are budget conscious and buy generic. However, check out the brand names for the products you buy and see if any participate in these two programs. If so, just consider if you can afford the extra cents for a good cause.

DeafBlind Hope is definitely a worthy cause. I invest my life in it, so I know. The DeafBlind are the least helped population whose expenses far outweigh many disabled’s expenses. You can do a lot to help a DeafBlind person get the training and equipment they need to be independent and productive. WCA’s DeafBlind Hope program strives to keep zero administrative costs to allow all donations to go to the clients who need them. You or your organization can help in many ways. Many have held unique fundraisers for our purposes such as t-shirt sales, craft festivals, music festivals, etc. You can find out more at DeafBlind Hope. Whether you search the internet, shop, clip and save, or whatever other ideas you can think up, you will be helping some truly wonderful people. Regardless to how you help, you can also pray for our mission, and spread the word about DeafBlind Hope.

Links for Eligible Products
Labels for Education

Boxtops 4 Education

Mail coupons to:
Wynfield Christian Academy
143 Williamson Dr.
Macon, GA 31210

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Well, today we got up all excited. We did a morning walk around the campus after breakfasts. Then we headed in to wait our turns for hearing our dog’s medical records. I brushed Joe while I waited. Then Kate came into my room and read every single word of the paperwork. Little Joe had all his vaccinations, neutering, and dewormings with no problems. The school tried to implant a microchip for possible identification as a backup to tatoos and tags. It was noted that Joe’s body rejected his twice, so they gave up. Little Joe doesn’t have a microchip. Oh well, I will just hang on to him even tighter. I was given all meds, information, etc. on how to care for him and when to take him to the vet for check ups. The school recommends every 6 months for a working dog because of the extra stress the body is under. That won’t be a problem.
After lunch, we stayed in the dining hall as Kate and Katie read all the access laws, contract, and other information in our take home pack. It took all afternoon with all of the questions. Finally, late in the afternoon just after supper, I had my turn. Kate came into my room, read the entire contract again for me. Asked if I had any questions, and with excited hands, I signed my name where Kate placed her finger on the paper for me to follow. That was that. Little Joe was all mine. Kate left and Joe and I had a victory dance in the room. He was so excited that I was so excited. We just hung out in everyone’s rooms back and forth the rest of the night. Little Joe and I put out the lights about midnight.
Oh, he is mine!!

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We went to the DTC and ate lunch there. We did routes in the neighborhood. We took much longer routes and different ways than before. Joe began very cautious and did a good job most of the way. We worked on helping Joe learn my height today with the overhangs. If something neared my face, we stopped and said, “No, watch.” He only took a few tries before he was catching it all. Good boy, Joe! After a long, hot, but good route, we arrived back at the DTC for lunch.

After lunch, we returned to the school. Staff had a meeting at 1:30. We were free until feeding time. Joe and I returned to our room and read a book. At 3:00 Joe got fed and medicated for his ear. His ear is looking much better. Afterwards, Nancy went to work with Trigger and everyone else disappeared, so Joe and I went back to read our book and cuddle.

We had lecture at 4:30. Kate talked about dog booties, dangers of fertilizers to our dogs’ feet, not going to dog parks, and flexileashes not being approved. You do not want to lose a dog worth 40,000 dollars. Simple. Know where your dog is at all times.

After supper, we sat around and talked until I got on with Scott a little after 7:00 pm. We talked for a while and then I retired to get a shower and finish my book while cuddling with Joe.
This has been a very good day. Kate praised us all. She says we are all showing confidence and increased happiness. We really look like we are enjoying ourselves. I know I am. I left Brian, my older son, a birthday message. He is 25 today. Now I am going to turn out the light and rest for a new day. Tomorrow we sign the papers for our dog to make it official. Joe will truly be mine. Wow! That is super! Good night.

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