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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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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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I was awaken early today and had no problem getting to breakfast on time after taking all my meds. Joe awoke in a playful mood, so I had played with him before I left.

In the cafeteria, people dragged in, but someone had known it was my birthday. The students and staff sang “Happy Birthday” to me.

At 9:00 we went the mall. Katie worked with me today because it was Kate’s day off. Katie took me into Dillards to the escalator. I had not been on an escalator since I lost my sight, so she took me on it a few times to get used to the feel. She took Joe on it a couple of times to see how he reacted. He actually seemed to like it. Katie then led us both through. You stand on the metal piece and make sure the dog is lined up and close to you. You talk to your dog in happy voices saying Ok, go. You get your feet placed on the edge of the step so you can tell when it starts to go down. You put your hand on the rail ahead of you to feel when it starts to level out. When it does, you again say ok, get ready! Go! The thing is to go quickly making sure your dog has plenty of room to get off. The escalator can be very dangerous. If the dog is too skittish, there will be a restriction about you can’t take the dog on escalators. Joe and I jumped on the escalator doing it just fine. Joe was wagging his tail and smiling. Coming off was just as easy. It was obvious that Joe and I were having fun. We did the up and down several times each. Finally it was time to load up. The trainers, Katie and Rick, let me go back by myself to the other end of the mall. They hung way back. Joe and I meandered around, but easily found the door out back near our seat.

We then went to the DTC and ate lunch there. We did routes in the neighborhood. We took much longer routes and different ways than before. One street had trash and limbs piled along the street as it was garbage pick up day. He was a little distracted at first. In fact he was so distracted that at full speed he let me plow into a lamp pole. I said, “No!” firmly and snapped and released the leash backwards with my left hand. I then touched the pole and said, “Watch!” After that, he watched everything more cautiously.

We arrived back at the center in time to feed the dogs. At 4:00 we did obedience. We worked on stay and recall with finish which is stay the dog, leave it, and then after a bit tell it to come requiring it to sit directly in front of you facing you, then you say heel, and the dog goes to the left side and sits. Joe does very well with this. They tried to call him, and he wanted to go, but he just wagged his tail.

Supper at 6:00 was very good. Rudy fixed Hamburger steak smothered in onions and gravy, sweet peas, and garlic potatoes with special spices. I was in heaven. I got 3 chocolate chip cookies for dessert. They were sugar free, but you would never know it. Everybody sang to me again. It was very sweet.

After supper, we worked on a cd presentation for all the students. I gave them all my pics that I have taken and so did Nancy. We then added some more by doing a walk around the campus to make the ending shots. It was fun. Then we spent a while uploading pictures to the PC for Darlene to work on while we are sleeping.

I talked to Scott for a little while at 9:00. Then returned to my room and read a book and cuddled with Joe until about ll:45. I think I have had a very good birthday. I certainly have the best birthday present you could get: a companion, a guide, a new life. On that thought, I will say Good night! Good night, my little buddy, Joe.

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I really have nothing to say about today. We got up at 7:00 am. We had breakfast and then we all went back to our rooms. I tried to have a worship service just Joe and me, but somewhere along the way I fell asleep. Joe and I didn’t stir until almost noon. We had lunch in almost silence. Daniel talked a little, but no one responded. Soon even Daniel was quiet. After lunch and busying our dogs, we all crept back to our rooms almost woodenly. The looks on the faces that I could only see when passing close was almost empty. Fatigue was still present in all. Joe and I went back to our room and I listened to a book. Joe and I cuddled on the floor as the tape played. I don’t think I dozed because I could keep up with the story, but I may have.

At 3:00 we fed the dogs and Nancy talked to Anthony and me about playing Monopoly, a completely brailled game. She had never played the game. We played a couple of hours, but then grew tired. We cleaned it up after supper. Then Darlene brought out a game called Reminiscing. We played that until 9:00. I didn’t talk to Scott today because of storms going through the area. After 9:00 I went to my room with Joe and showered and listened to my book cuddled on the floor with Joe.

We still feel tired. Joe played briefly today with Hall, but even they only wanted to rustle and tussle with each other for a few minutes. I guess even the dogs needed this day. Tomorrow we should be ready to work. I will also turn 45 tomorrow. I don’t feel 45. The body sometimes feels tired because of asthma or diabetes, but the part that is really me feels like 20. I even still have the same giddiness and fears. I really don’t feel like 45. Good night until tomorrow.

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We were awaken at 5:40 am this morning. We went through the morning rituals preparing for the day. Joe seemed to sense this day was different. He watched intently as I dressed in my pants and shirt after breakfast. At 7:30, we were outdoors having pictures taken for our ids and ourselves including a class picture.

After that, the puppy raisers had arrived to watch our 9:00 route which was the Freedom Walk route which included the find the plantar area. Our turn came and Joe led me expertly around stopping at curbs and easily finding the planter. At one point he did see his raiser and tried to go over to her, but when I said no, forward, he wagged his tail and moved on.

A short time later, the students were led to different parts of the building to meet the puppy raiser of each of our dogs. I met mine in the computer room. There were four people present. The puppy raiser, Rita, her husband, her daughter, and the daughter’s boyfriend sat in a semi-circle. Rita is actually an employee of Southeastern. She is the puppy department head where she oversees the newborn puppies and their mothers. Rita and her family told me many stories of Joe’s puppyhood. I now know that he was allowed on furniture like her career changed dog Max. Joe also slept in the bed between her and her husband. These were definitely not puppy raiser dept.-approved methods, but who is going to argue with her being a department head and 4 time success raiser. Joe will be spoiled at my home, too, so I don’t mind. Rita says Joe doesn’t like to swim, since an over exuberant lab neighbor pushed him in a few times. I don’t mind if he doesn’t swim, I just don’t want him afraid. Rita says he isn’t afraid just wary. Rita tells me that Promise and Ryan are Joe’s parents. I remember them from past puppy raisers meetings. Rita also brought all his favorite old toys including his stuffed snake. She brought him a new bone and dog biscuits. There is also a guardian angel medallion for him to wear on his collar. It is obvious that Joe loved them all. Joe went from one to another for his favorite rubs. Sarah, the daughter seems to give the best belly rubs. The dad gets him on the back just above the base of his tail, while Rita gives the best ear scratches.

At this point, we are led out to get pictures made with our puppy raising family. I also have pictures made with Misty and Schotzi for our brothers pic.

We are then led into the dining hall for the graduation ceremony. They introduce all the pertinent staff and then turn it over to the trainers to bring our certificates to us one at the time. We each are asked to say a few words. We all generally say how much we appreaciate Southeastern, the puppy raisers, trainers, etc. and how we are all feeling more confident in our abilities. We no longer see blindness as insurpassable obstacle.

We then had lunch with our raisers and finished off the day with goodbyes and a few tears. I let Rita and her family know that I will keep in touch. I will send them pictures of Joe and his adventures. I thank them all one last time for their sacrifices and efforts with Joe. I will see Rita again Friday before we leave since she works here.

I talked to Scott shortly afterwards, but all of us including the dogs felt drained after the day’s events. We went to our rooms and read books and slept until supper.

After supper, we all got wound up and needed to release some steam. Daniel and Bobbie had caught a cab and went to dinner. Crystal went out with her parents and daughter for dinner. Wayne went home after graduation. He didn’t have to stay for the final week. Jerry was tired and went to bed. Chris, Anthony, Nancy, myself, and Misty played a game of Outburst. Nancy and I played against the other three. Despite the unbalanced team numbers, Nancy and I win easily.
Afterwards we all needed a way to vent some tension from the day. We got a little silly and played some practical jokes on Daniel and Bobby. First we put some popping bubble plastic under their toilet seat. When they sat down, it would scare them. We also taped up the tissue on the roll, so it wouldn’t come unrolled. Someone decided to get a poopie bag a put a chocolate bar in it. They cut the candy into chunks and mushed it some until it looked like poop. This bag was placed on the bed. We made sure that our jokes wouldn’t hurt anybody or cause a mess that someone else would have to clean up for us. Darlene, the house mother, chuckled as she helped us set things up. When Daniel and Bobby came in, they fell for the jokes easily. They were good sports. When we passed the poop bag around taking a bite, Daniel made a face and looked like he was going to retch. Finally, he got the message and dropped to the floor laughing. We all laughed. He told us how he had used the toilet and heard the loud popping noise and thought the toilet was exploding jumping up backing out of the bathroom. Yes, we all enjoyed a good laugh. It was something needed after such a long, emotional day.

We laughed for awhile, but then one by one we realized how drained we suddenly seemed to feel. One by one we drifted quietly to our rooms. I decided I was too tired for a shower and it was quiet time. The fan in the bathroom would be disturbing to my neighbors.

Well, I am finishing this now because I really can’t think anymore. This has been a great day, but I have no more left in me. The emotions are expended now. I must sleep. Good night….

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