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Posts Tagged ‘tactile interpreters’


My Look Back In Time Continues:

Well, the days are getting colder, but I am keeping really busy. On Sunday, I listened to another dvd from MWBC. That really gets the week going well. Then Monday morning, I had a phone conference with my vocational team and my WCA school staff. That went really well. At least it did after I quit crying at first. I really enjoyed hearing their voices. It was very nice of them to take time out of their already busy schedule to help me with not only school, but now with my training here as well. My vocational team thought that they could learn to help me better by hearing from my staff what they thought I had trouble with in doing my job like hearing on the phone, talking to parents, sending e-mails, writing, doing bills, etc. It was very helpful. I didn’t even realize a lot of what I was having trouble with. It was really good. We will be meeting again next Monday, too. I am really looking forward to hearing them again.
In Communications, we were working with tactual sign language more. My instructor, Val, is putting more emphasis on braille and the SBC (small braille communicator) as my main mode of communication and rightfully so. There are not many signers around me at home, but I still want to learn it because I know that braille and typing won’t always be feasible like at night or for quick questions and comments when it is too much trouble or not enough time to get out the SBC. However, even with tactual sign, the SBC, etc., my biggest fear is that I think alot and I like to talk about many subjects and many deep subjects. How will I share with others these in depth conversations? Nobody wants to type for long conversations and sign seems very limited, especially tactual. I don’t want to be limited to conversations about the weather or what I need or want at the moment. I guess I am worried about that. My great-grandmother was blind and she didn’t hear very well, so people would come and ask her things about how she was and what would she like to eat, etc., but that was about it. She would sit alone for many hours and just talk to herself. In fact, many people would kind of laugh about her sitting and telling stories to no one. I probably did, too, but now I am afraid that I might wind up being alone and talking to myself, too.
Anyway, my sign teacher has me and another student blindfolded and asking each other questions in tactual sign. We have started at 5 minutes at the time and are building that time up gradually. It is very frustrating. We tend to sign too fast or our signs are too “muddy.” New signers don’t know the signs very well, but even native signers can have unclear signs. They get sloppy since they do it so much just like hearing people when they talk and speak in quick phrases or “Southern drawl.” It is hard to understand lazy signs, especially tactually.
We had Big Town Hall meeting this week, too. I got drafted to be on the Town Hall committee, so I had to help run it. I didn’t really want to, but I speak in public all the time. Town Hall Meetings are a way to run small governments or how bigger governments find out what the people think about an issue. Here, Town Hall is how the residents handle problems about residential living. The issues for this meeting were smoking, plastic cups with covers in the cafeteria, Thanksgiving food baskets, etc. People made suggestions about how to enforce the smoking regulations and still be fair for the smokers. They gave suggestions like lights for the night-blind smokers, paths for the visually impaired to trail, shelter for inclement weather, etc. The plastic cups with covers were because many students while traveling from the food line to the tables spill their drinks soaking their food with whatever their drink is for the day. Covers would help that. The cups slide as they walk and feel their way to the tables. That is unpreventable. The spills aren’t. (As a side note here, New Yorkers say you get on line to get your food rather than you get in line. It took me a week to really figure out what they were talking about.) The Thanksgiving baskets are the current service project the students are doing for the community. We have two families in the community we are helping to feed for the holidays. Now, you probably would think a Town Hall meeting would be a big room with a speakers’ table and rows and rows of chairs for people facing the table, right? Well, here that wouldn’t work. All of the students are visually impaired and hearing impaired or deaf and visually impaired or deaf blind. Therefore they need interpreters and interpreters interpreting in different ways. In some areas of the room, you have two chairs facing each other. That is for the deaf blind with their tactual sign interpreter. Then you have small groups of chairs in a semi-circle around one chair. That is for the deaf and visually impaired who can see signing at short distances. You also have chairs side by side. That is for the blind and hearing impaired who use FM systems. Their interpreter sits beside them speaking into their FM microphone. It probably looks very messy and unorganized, but is actually very structured.
In mobility class, I had to leave Joey with my communications instructor, and Joey’s friend, Val. He didn’t really like that, but Val played with him and rubbed his belly. He put up with it. Natasha, my mobility instructor, took me to a big Bed, Bath, and Beyond store that is two floors and has an escalator up to the front doors. It even has an escalator to take the carts up and down. It was strange, but very neat. Anyway, I needed to learn how to do escalators safely with a cane. The technique basically involves using the cane to find the grate that is at the top or bottom of the escalator. That is how I know I am at an escalator.

This is Natasha, my Orientation and Mobility Instructor at HKNC.

"This is Natasha, my Orientation and Mobility Instructor at HKNC."

This is me using my cane to find the escalator grid plate.

"This is me using my cane to find the escalator grid plate."


I also have two communication cards that say take me to the a) up escalator or b) down escalator. To verify direction, I find the handrail and feel which direction it is going. Once I have the one going in the direction I want, I use my cane to find the edge where the steps go in or come out. I put the tip of the cane there and hold it steady so I can feel the cane bounce when the separation between steps goes by. That is my clue to quickly step onto the escalator holding onto the railing with my right hand. Then I move the cane up or down a couple of steps (depending on which direction I am going) to give me plenty of warning about when it is time to step off the escalator.
When my cane detects the step flattening out, I know to get ready.
When the tip hits the edge of where the step goes into the floor, I move my cane in a sweeping motion over the grid to make sure nothing is in the way and then I quickly step off the escalator. Escalators are very scary when you can’t see, but this technique makes them easier to navigate. I have some pics here of the important parts.
Finding the entry point onto the escalator.

"Finding the entry point onto the escalator."

This me safely entering the escalator.

"This me safely entering the escalator."

Here I am clearing the step to make sure it is safe to exit.

"Here I am clearing the step to make sure it is safe to exit."

In braille class, I am still driving me teacher crazy. She jokingly talks about not having enough work for me to do. Of course, she has no problem pulling out more. I know enough contractions now that all paperwork in coming to me in contracted braille. If I haven’t learned the contraction, I usually can still figure out what it says by content. Speed is improving slowly. It takes me about 15 mins. to fully read and comprehend a braille page which is bigger and squarer than a regular sheet of paper. It used to take me much longer to read, and I would probably not get the meaning too well.

Sarah and me. Sarah is on the left.

"Sarah and me. Sarah is on the left."


Friday evening at snack time which is about 7:30 pm each evening we had a party to say goodbye to a friend of mine. We had just gotten where we could really talk to each well. I finally knew enough signs for her to understand me. That is my typical luck. Anyway, her name is Sarah and she was born deaf with Usher’s Syndrome. She is beginning to have serious vision trouble and was here for the two month evaluation to see if she needs further training now or later. She is nineteen and graduated this year from her state’s school for the deaf. She is very sweet. Sarah fell in love with Joey and now plans to go to Leader Dog, Inc. in Michigan in January to get her own dog. (Current day update: Sarah graduated last year as the first DeafBlind Pastry from a noted culinary school. There is a lot a DeafBlind person can do. Oh, and she did get a guide dog, too.)

Here is a picture also of my friend, Steffy, who is totally deafblind that I have told you about being so patient with me as I learn sign. Steffy in in the center.

A few students including Steffy in the middle sitting in the residence hall lounge at snack time.

"A few students including Steffy in the middle sitting in the residence hall lounge at snack time."

Finally, my friend, Jane, from South Carolina. She is blind and hard of hearing. She and I get along since we understand each other so well (the staff never understands our expressions.), and we both know how cold it really is!

This is Jane.

"This is Jane."

We went to IHOP today for breakfast. I ate too much. This was very welcome after having so much chicken salad, tuna salad, and turkey burger for meals here. They serve way too much pasta for diabetics. I am afraid I am going to turn into a chicken or a tuna fish. Anyway, Steffy was so sweet in the van on the way back. She asked me tactually what I ate and how much. I signed back I ate pancakes and eggs and bacon and I ate full and I feel like blow up. I wrote it that way on purpose my English experts. I signed it just about that way. Boy, Steffy is patient with me!
And also, here is a pic of Steffy and I communicating with tactual ASL.

Steffy and I communicating with tactual ASL.

"Steffy and I communicating with tactual ASL."

Well, I think I will stop now. I wouldn’t want you to get bored and not want to come back to read more of our little adventures. Keep praying for us. Joey’s ears are better, but now that it is cold he has another problem. It took almost 30 mins. for him to do his “busy’s” this morning. He kept looking between his legs trying to figure out why nothing was coming out!
Bye for now and God bless you and know that we are both praying for you.
Renee’ and Little Joe

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Still Looking Back:

Time is passing, but I have to admit that I wish it would go by a little faster. The week has been interesting at times and upsetting at others. My favorite thing happened on Monday afternoon. I returned to the residence hall and was given a small package. I opened it to find 3 DVD’s from my church, Mabel White Baptist. A friend of mine, Jana, had been so thoughtful as to have the master copied for each Sunday that I had already been gone. It was even more special to me because I got to see more of the people in the church and choir than just a copy of what was edited for tv. I spent the next hour or so, singing my heart out with the choir with tears of joy running down my face. I could even see Mr. George Foster’s colors! Many of you won’t understand that, but my church friends will. Basically, Mr. George is a dear man who sings in our choir in the front row. Although I only see dark shadows and some blurry bright colors now, around Mr. George I see the most beautiful colors and when he reads from the Bible (he orates better than James Earl Jones) those colors brighten to a bright light of white. I love to hear and see him read! I do not believe in the New Age explanations of auras, so don’t even ask me about them. This has nothing to do with auras or New Age spiritualism. God has just given me a little gift to help me cope as He saw fit to take my vision away. Regardless, all of this is in His plan and will somehow bring Him glory, especially if I can hold tight to Him and not get in the way.

Training has gone well when I have been well enough to go. I finished making several groups of communication cards and brailling them so I can find them when I need them. I made some for clothes shopping, food shopping, restaurants, airports and travel, and hair cuts. I know how to do them now and will make more when the situation warrants them.

In mobility, I practiced cane travel without my dear Joey. He didn’t like that. He thinks he is supposed to guide me. He is, but I have to know the ropes to better guide him. We have also found that my training in Ga was ok, but lacking in some ways. A few things I actually think are safer the way HKNC teaches them. The hardest thing was reteaching myself to walk with my cane remembering to “clear my steps.” That means that my cane is supposed to be ahead of my steps so that it will catch potholes, debris, etc. before my foot steps down there and gives me enough reaction time to stop. I am sooo uncoordinated that we laughed as I tried to keep in step. I was starting to walk like a tin soldier!big grin

Due to asthma attacks, I missed technology most of the week. In Independent living, I cooked Chinese Chicken in a wok on the stovetop. It was good. It was pretty easy and didn’t take long to make. That is the key for me. I want it all quick and easy, but good!

Sign language instruction is becoming the priority for me in Commuications (CLC) class. I am still doing well with my braille. I have now gotten well over a hundred contractions learned and am brailling Perkins Braillers(Perkins Brailler- non-electric typewriter with only 6 keys and a spacebar) in contracted braille every night to cement those in my head. We are now going to put more emphasis on the sign languge (tactual) so I can communicate around here more. Most people are deaf, so I have a hard time talking with them since my signs have been so limited. I am looking forward to that. I have been teaching Scott, my husband, some signs at night on the XBox 360 live web cam. He is trying, bless his heart!

I saw a Retinologist and the eye doctor on Thursday morning after one my my attacks. I was in the nurse’s office all morning. They pushed my doctor’s appointment until last so I could get over my attack first. They dialated my eyes. I am now showing some damage to my retina which has been hard to see until now. I also have some damage to my optic nerve pole which is explaining my very poor central vision. That narrowed my cause of blindness down to atypical Retinitis Pigmentosa or Rod/Cone Dystrophy. Regardless, they say I am in late stages. Total blindness is a definite possibility. They recommend to have some final answers on my prognosis and my children’s children that I go see the world’s leading expert on Retinal Degenerative diseases who is located in Boston, MA. Since this will not have anything to do with my job, Vocational Rehab won’t pay for it, so HKNC can’t send me now. It will have to be something we do ourselves once I return to GA. It is an expensive trip, so I doubt it will happen, but we will just let time and God tell us on that issue. Needless to say, the news didn’t make me feel any better.

I have mentioned more asthma attacks and yes, I have had two very bad ones. The smoke situation has gotten worse and some smokers have taken all of this personally. I am becoming public enemy no. 1. Although, actually, the NY state laws were being violated before. My asthma attacks just brought it home to HKNC why those laws were important. They moved the smoking areas, but without doing much thinking, just placed them along the main sidewalk that we all have to trail to go between the residence hall and the training building. Now I walk through a tunnel of smoke. After the last attack, the powers that be said they will move the benches, but are looking for a way to be equitable to the smokers. I told the medical team that they should move the smokers to the middle of the field on the side of the building, but provide them with a covered place to sit and talk as they smoke. They are having a big meeting next week to discuss the matter. In the meantime, I am late to class as I sit in the residence hall until staff says the sidewalk is cleared of smokers. I was already pretty lonely here since conversation was difficult, but some of the smokers now make a few “comments” that even I can understand and stay away from me. It is upsetting and I was feeling pretty tired after no sleep for two nights of terrible breathing and two attacks. I spent Friday afternoon crying and wanting to go home. I can sign that very well now!!!!!

Well, don’t worry about us. Joey snuggles up to me even closer when I am sick. He is my 2nd best friend! Jesus is my first and don’t worry, Scott is tied at 2nd!

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Continuing my look back:

This has been a long week and weekend. My braille class on Monday was very frustrating for me and possibly my teacher who had to put up with me. I was so nervous with her watching me that I couldn’t make out hardly any letters. Alone, I am reading a whole page in 20 mins. surprise Oh, I am burning the pages up, aren’t I? Actually that is faster since I used to get tired before I finished a page. I find it funny and frustrating at the same time when I spell out a word like b- e- a- t. Then cannot figure out the word to save my life. My mind can’t seem to switch from the individual letters to the word-beat. I can’t even read a simple word like beat. The whole thing is from the fact that I am actually “rewiring” my brain to take print input through the portions of the brain that deal with touch. Then it has to be routed to the reasoning part of the brain. Slowly, but surely, I will get it. You have to focus very hard and you have to relax. Relaxing when people are watching me has always been a problem for me. I used to be able to teach away and do all kinds of crazy things with my students as my principal would come in and out, help us, watch us, etc. However, as soon as it was evaluation time, I would freeze up terribly. I have such a strange personality. Anyway, I practice my braille daily, so I am sure it will eventually click.

In support group, we shared how friends and family, though loving us and well-intentioned, can’t seem to understand our decrease vision and hearing problems. They all shared how even family members get tired and don’t even want to try to communicate because it is frustrating for them, too. Arguments are quite common because one or both parties will misunderstand each other. It was echoed around the room as more hearing and vision is lost, the more we tend to sit alone.

It technology class, I had to spend time with JAWS and the braille display editing the mistakes in a paper. I would go through with the JAWS and catch what I could that way, and then switch to the braille display and find the rest. I still like using the braille display better. I misunderstand JAWS speech a lot, but until I am better with braille, I will need both.

Tech Lab

"Tech Lab"

This was the tech setup for me including the braille display.

"This was the tech setup for me including the braille display."

Joey under the desk in my tech class.

"Joey under the desk in my tech class."

In communications, we began making a communications booklet using a simple photo album that is small enough to fit into a pocket. Val printed up some cards with some common things that I might need if out alone such as, “Please lead me to a quiet table” or “Please help me to the handicapped accessible restroom.” She also made one to inform people that I am deafblind and can speak inviting them to type on the regular or QWERTY keyboard of my portable braille communicator to talk with me. The next morning she took me out early to breakfast at a small cafe that really was quite fancy. At 8:00 am, they were dressed a bit more formal than we are used to and the meals were definitely more than Waffle House and Shoneys breakfast bar. The food was good. I used my cards to get us to a table. I then used the SBC (braille communicator) to ask about food categories. I choose the omelets. Then the various omelets were typed in as I read the braille side. I chose the Western Omelet with homefries, coke, and V8 juice. It was slower going than normal ordering, but when I can read faster, it will be easier. Many places do not have braille menus and often do not have those menus transcribed very well, so they are difficult to use. We will use this again soon and I will have Val take some pictures to help you understand it better.

I also began sign instruction with a communications teacher. I will be doing exclusively tactual sign instruction. It is really the only sign that is usable to me. I see so little of the other person’s finger movements that is too easy to misunderstand the signs.

In communications, Val also helped me to pick out a braille wristband watch, a wallet for keeping my money sorted, various writing guides that are tons better than what I have tried to use, and messenger bag. I don’t know if I will get the messenger bag, but we discussed it. I have to keep my hands free to command Joey and shoulder bags frequently fall off during the command movements. Sometimes it scares Joey falling off like that. I am also looking into a little backpack purse, too. All of these things I used to take for granted. I can’t count money anymore because I can’t see what denomination the money is. I have learned money folding, but without something to keep them in the folding gets messed up in my pocket. I am then back to not knowing for sure what my money is and people take advantage of me when I give them more money than I think I am. I have also use signature guides and check writing guides, but they all tend to slip and are hard to place correctly on the paper. Here Val showed me guides for writing cards, letters, checks, etc. The check writing guide is so unlike anything I have seen and it worked very well. You actually put the check inside a plastic holder with slots in the right places. There is no way to get it wrong.

In Independent Living, I could Chicken Parmigiana in the microwave with noodles cooked in the rice cooker. It went quite well. The chicken turned out well and was done in 5 mins. I think even someone like me who hates to cook can handle that. My husband might like the outcome of this training.

I also saw the low vision spec. again. We did another field of vision test since the doctor who specializes in Usher’s Syndrome will be seeing me next week. We did the full test which means they didn’t shorten it for just a little more than my known peripheral vision. It was long and I had a terrible headache afterwards. Melida, the low vision spec., also helped me with the CCTV to show me my current magnification requirements and then helped me find the right tints for the new glasses they are going to get me that will help with light sensitivity, UV protection, and clarity. The glasses will be dark amber with shields on the top and sides. I haven’t been able to get exactly what I need anywhere else.

Mia, my case social worker and mental health specialist, helped me by changing my schedule a little more. My case manager wanted me to have a little less self-directed study and more actual instruction in sign, braille, and technology. One really neat thing she did was to schedule a class with her, Mia, and Steffie, the deafblind woman that I try to talk with as often as I can. Steffie is very patient and kind. She even tries to teach me new signs. With Mia’s help, we are going to talk more so that I can learn the tactual sign faster.

In not so good news, I missed the Apple Festival on Sat because I had to take Joey to the vet. I noticed that he was getting ear infections in both ears. I expected that since he is prone to them and was trying to prevent it, but he still got them. The vet was very nice and did a deep clean of the ear canals using a syringe and small tubing. Joey was a real trooper. He is now getting drops in both ears daily for two weeks that has hydrocortisone, antibiotic, and anti-fungal meds in it. It has a long tubing to allow deep access to the ear canal as well. That should really get the meds down where it is needed. We will go back in two weeks for a recheck.

I was not allowed to go to church on Sunday because they had another trip planned to the festival, so there wouldn’t be enough staff. I was told to go to the festival. It seems these trips are counted as part of my training. I was observed and instructed as the day went on. The festival was nice. It was a lot of walking which I like. I had a little food like roasted corn and apple pie with ice cream. We were all “appled out” though after about 3 hours and since we were allowed to be out until after 4:00, they took us to a beach about 20 mins or so away. It wasn’t a beach like I am used to since there wasn’t much beach sand, but dirt and rocks. However, it was still very pretty. I could feel the breezes and make out the white blurs of boats on the water. We were on North Shore meaning we could see the land of the mainland a short distance away. I couldn’t, but it was all interpreted to me. They describe every thing in detail to you. I would imagine that to do that so well to help a blind person visualize would take a good deal of practice.

Today is the Columbus Day holiday, so the majority of HKNC is closed. I am just catching up with the blog, sleeping, and studying braille. Joey is resting. He doesn’t feel quite up to par. My allergies and asthma is getting a little worse due to the fall weather, so my blood sugars are running a little higher has well. I will spend most of the day resting and preparing for the coming week. I have some pics of things I took regarding training. I am having a little trouble getting them uploaded, but will add them as soon as I figure out what is wrong. It worked well last week, so who knows?

I miss you all greatly. Take care and know that Little Joe and I are thinking about you and praying for you. Yes, Little Joe prays every night. He is a very spiritual dog.

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TOUCH POINTS

by Renée K. Walker

 

You may remember me describing here the troubles I have had getting doctors in my area to provide me interpreters. That fight continues, but I now have completed the first battle. Though I can’t speak of the specific circumstances or resolution, I can describe the process that I have been through now and that the process worked. At least for one incident, compliance to the ADA law and education to help those who come into this particular situation in the future has been met. That is what the advocacy process can do. We all need to learn the skills to advocate for ourselves, but at times, we need help to move the mountains before us.

 

The best way to begin is to call and ask for an appointment first. Once the organization has given you an appointment, tell them your specific communication needs that fall under ADA law for effective communication. This could be the CART system, which is where you have a typist who has been trained in medical or legal interpreting depending on your setting, or it could mean an ASL interpreter, or some other form of communication. If the office tells you that they don’t provide interpreters or your method of communication, try to remain calm and use the moment to educate the personnel regarding the ADA law. Explain that it is required by law and offer to provide the personnel with a copy of the law section that pertains to the situation. You can also direct them to the National Association for the Deaf’s (NAD) website at www.nad.org or the ADA website at www.ada.gov. Document your call and its contents in some way. If you use relay services, save the transcript. If you have a hearing person call for you, see if they will write a summary of the transcripts. In my state, the laws allow me to record conversations without the permission of the other party. That could be a possibility, but you have to check the laws of your state first. You do not want to be in violation. A written record is usually quite sufficient. Even if the office personnel stated they weren’t interested in the ADA information, mail them a copy anyway asking them to please look it over and seek legal advice if they wish. Respectfully ask them to consider your need. Call the office again after giving them a little time to do as you requested, documenting the phone call. Many times this opportunity to educate politely is all that is needed to help people to understand your needs and their responsibilities. Often, the personnel didn’t mean any disrespect. They just were unfamiliar with the law and had not had any prior experience with disabled persons needing communication assistance.

 

In the event that your needs are still not met, please don’t get discouraged and give up or go to an appointment using just a friend or relative who can communicate with you. The ADA law has been written to help you. There are reasons the ADA law stipulates using a qualified interpreter. Family and friends may not be able to translate the complex medical or legal concepts to the patient in an effective manner. Often times, emotional situations may be difficult for them to handle, and the family member or friend may resort to hiding some information. The love and concern is understandable and commendable, but it is not appropriate when the patient’s ability to make decisions regarding their health or legal issue is hindered. It is the patient’s right to decide the form of effective communication they need and want, but understanding why the ADA law was written is also important in helping the patient function on his own behalf.

 

Your next step should be to contact your state’s local advocacy agency or ADA attorney. The attorney assigned to you will then work with you to get the information regarding your complaint. If non-compliance is determined, the advocate will contact the organization and inform them of your complaint against them, providing the legal information that the organization needs to understand in order to best serve you. This may be enough to resolve your situation and help you get your communication needs met.

 

If not, you are not alone. Your advocate will help you with the next steps. If you wish to proceed, the advocate will file on your behalf a complaint to the Department of Justice (DOJ). You will provide input as to what you would like to receive from the organization that is in non-compliance, such as an appointment where an interpreter is provided to allow effective communication. Once the complaint is written, you will receive a copy and give final approval to allow the advocate to file the complaint with the DOJ. DOJ prefers to start off with using a third-party mediating company. This company provides people who are trained to remain objective and help the parties in a dispute come to an agreement. In this situation, they help the organization understand the need for compliance to the ADA and the best procedure to do that. They also help educate both parties in how to best meet the needs of the complainant (person filing the complaint). The mediation meeting takes place at a neutral place or using telephone conference or whatever method works best for the parties involved. Your advocate is with you throughout the process. You can decide if you want the advocate to speak for you or if you want to speak for yourself asking help from your advocate as needed. The process of mediation is not a court trial. It is an informal meeting for discussion. The mediator helps to keep the discussion flowing and working toward resolution. Either party can end the mediation process at any time. All conversation during the mediation is completely confidential, so you and the other parties can be open. You are not forced into anything, but you do have lots of support from your advocate and the mediator to help things run smoothly and professionally.

 

Hopefully, the mediation meeting will lead to a resolution plan. The plan itself may take several months or more for the respondent (the person you are filing the complaint against) to fully complete all aspects of the plan depending on the situation and the complexities involved. When all is complete, you will be notified. If you are to be given an appointment using effective communication, that will be part of the plan. You will be given the opportunity to arrange that appointment. The mediation process and your case will not be closed until you and your advocate agree that the plan has been completed as prescribed.

 

Should the mediation process fail, the DOJ will then take the case back and a federal trial may then be held. I am not familiar with that process yet, and hope I will never have to go that far. I would prefer that education and/or the mediation process would be enough to secure my rights to effective communication in medical and legal settings. From my experiences with the mediation process so far, I can see that it is highly effective, and the results are probably very successful in many cases.

 

Remember as you request for your needs to be met, that you are not only advocating for yourself, but you are also advocating for others who will follow you. If we all are more willing to use the resources available to us to enforce the ADA law, we can educate more organizations and make the lives of all disabled a little easier.

 

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

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Touch Points

By Renée K. Walker

A Tribute

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

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

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

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

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

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

 

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

 

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Touch Points

By Renée 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

 

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

 

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

 

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

 

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

 

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

 

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

 

 

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

 

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Touch Points

By Renée Walker

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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