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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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