Posts Tagged ‘Support Services Provider’

More of my time at HKNC.

It is time to write another entry. Things have been going pretty well. I did have some asthma problems this week brought on by weather and cigarette smoking. I had mentioned to staff earlier that students and staff were smoking at the doorway of the residence hall making my breathing more difficult. The weather for a couple of weeks was “hot” (NY style, not Ga) and humid. I was comfortable and my asthma was better than at home, so I had no real complaints. However, the cigarette smoking at the doorway was proving to be very difficult. The door is always locked, so you have to ring a bell and wait until someone lets you in. You can’t move away from the doorway because the staff can’t see you and assume someone already let you in. Therefore, you are stuck sometimes several minutes standing there breathing in the crud in the air. Staff, upon my request to ask people to move back to the designated smoking area about 25 ft from the door, always said they would look into it. The situation didn’t seem to change until Wednesday night when I had a severe asthma attack about 9:00 p.m. My breathing remained erratic all night despite the rescue inhaler and the nebulizer machine. Staff thought they would have to take me to the emergency room. No one has smoked at the door since. It turned cold Friday afternoon and there has been no smoking since. Funny… When it was warm, they felt like they had to have that cigarette every hour. When it is too cold to stand, they find they can go hours without one. I am just grateful that my breathing is better.The week of classes has been fine. I reviewed signs in my sign class and learned a couple of new ones. Braille is better than sign class. I am learning much faster. Of course, part of that is I can accomplish a lot more alone when studying braille independently. Sign is a little harder to study alone. I now know about 87 of the 189 contractions that I have to learn for Grade 2 Braille. Even better than just knowing them, I recognize them most of the time when reading and I can type them on the Perkins Brailler. I transcribe Braille several hours a day. Although, I think I need a break. I woke up the other night with my hands in the air reading Braille in my sleep.

"Perkins brailler which is a typewriter device for braille."

"Perkins brailler which is a typewriter device for braille."

 I am finding it harder to study my sign language though. It is hard to get the staff to sign to me tactually or even regularly. The deaf staff know that I don’t know ASL, so they get a hearing person to deal with me. Hearing staff seldom sign because they think I don’t need it. As one staff member stated, I make it look so easy when I talk and seemingly hear fine that they don’t realize that I am getting headaches from trying to see, hear, and guess what people are saying. I ask them to sign tactually with me (I really don’t get much from regular signing anymore. I can’t see it well enough), and they will for a few words, but then gradually stop and go back to using just voice. My CLC (communications) teacher sent out a mass e-mail stating that I needed total communication (meaning voice and sign) and the sign needed to be tactual. I don’t know who all was on her list or when they check their e-mail, but as of Sunday, today, there has been no improvement. I practice signing everyday by myself and now once a week with Steffy because one staff member noted that would help and arranged her schedule to allow it. By myself, I talk and often pray using just ASL. That is good practice, but it doesn’t help me with recognizing other people sign or to really carry on a conversation. My schedule changes next week, but they actually took off the lady who has been my sign instructor. Maybe Val wants to do my sign instruction. That will be great. I like Val. We get along great and I learn quickly with her. She recognizes my learning style and plays right along with it. I like Donna, the one I have had for two sessions now, as well.

"Donna was the one who turned out to be the best ASL teacher I had."

"Donna was the one who turned out to be the best ASL teacher I had."

I don’t know why they made that change. I guess I will find out eventually.Going along with the conversation that sign is slow, the topic of Christmas vacation and when I will be going home for good, etc. came up this week since all vacation plans have to be made soon. Most staff wouldn’t talk to me really about when I might plan toward be done with training. I realize that is hard to pinpoint because it all is based on how fast I am learning. Val did tell me that her goal for me is to be completely independent as a signer, braille reader, traveler, etc. as a totally deafblind person. Therefore, she told me that she will not feel comfortable with me going home for good until well after Christmas. That makes it even more important to me to get more sign instruction since independent study is not going to get me there very fast at all. I will be ok with being here if the training is meaningful and more than what I can do on my own. This is very disrupting to my personal life as well as my school life; therefore, I don’t want to be here doing stuff that I could do just as well or better on my own at home. So on that note, Christmas vacation was discussed. I can’t afford to go home at all if I have to pay for it. That is why I will be here at Thanksgiving. Vocational Rehab people told me that they would pay for me to go home at Christmas and return to Helen Keller. Hopefully, they will keep their word. My case manager has stated that she feels for reasons of traveling safely and with less stress and to have the emotional time away that about 3 weeks will be good. Her dates are to leave on Dec. 15 or 16 and return on January 5 or 6. I hope Vocational Rehab agrees. They have to pay for the days away just as if I was here, so they might not like that much time off. We will just have to wait and see.

"Joey in Ga hat that my Sunday School class sent me."

"Joey in Ga hat that my Sunday School class sent me."

Joey is feeling much better this weekend. I discovered that I heard very little of what the doctor said last week and the staff member who went with me didn’t give much of the information to other staff. Therefore, the nurse called the doctor and got all of the information. The medicine was not being given properly. Although it wasn’t hurting him, it was not helping him very much either. We are now on the same page. It did show me though that it is hard being deafblind, since a lot of people assume you are also mentally low functioning. I had tried to get the doctor to explain to me what needed to be done, so I would know. However, he didn’t feel comfortable with that and no one wanted me to give Joey his meds; therefore, I wasn’t included in the loop of information at all. Since I am not retarded at all, I do not like being treated this way. I might can understand why I shouldn’t give the meds to Joey since not seeing well might cause me to accidentally hurt Joey or just do it in a way that only waste the meds and not help him, but I want to know what is going on. That is a fear for me about going deafblind. I see it even here at Helen Keller, although better than the rest of the world. People tend to do things around a deafblind person not do it with them. They want to take care of things themselves for the deafblind person, not help the deafblind person do it for themselves. I don’t want to just sit here while people take care of me and make decisions about me without including me in the process. My mind still works just fine. I can make my own decisions about what and how things are handled. In a situation like this, maybe being mentally handicapped is a blessing in disguise. These people don’t understand enough to be unhappy that other people are controlling them and their lives. I understand that perfectly and I am not happy with it. I see that same frustration in Steffy only magnified tremendously. At times, she lashes out in anger. The staff speaks of not knowing how to help her be happy. It won’t take away all of the anger and frustration, but it will be a start if someone would just take the time to explain, not as you would a child in almost baby talk and as you are doing whatever, but before and ask this is what needs to be done and why. How would you like to handle this? I know that works better for me. Sure it takes more time. However, as a thinking human being, I deserve that time.This turned out to be more of a rant than mere boredom. Sorry. It is difficult being in a setting where I have to inform them of how much and what I ate, when I am taking Joey to busy or the dog run, going for a walk, etc. and even no, you can’t because we don’t have the staff to maintain your safety. Understand it, I do completely. Liking it when I am use to deciding everything and doing whatever myself, I don’t. It certainly makes me appreciate my ability to still be independent away from here even more. I am glad that God still grants me that. I hope it continues. I also pray that if it doesn’t that He will give me the strength to cope.

It has turned cold, and this Ga girl is feeling it. The staff laugh, of course, and tell me that I haven’t seen anything yet. My hands and feet are already cold. Brrrrrrr.Some of you are wondering if I was able to go to church today. No, there was another trip planned, so I was here. A friend of mine from church, Jana, is arranging to have the Mabel White services put on dvd and then sent here to me. I really like that because I can feel a part of the services and the choir even though I can’t be there. My mobility instructor did research some churches for me and found an independent church here that although not Southern Baptist seems to have similar beliefs except for the not being part of a greater association, and they have a similar worship style. The big problem is that it is farther away and I would have to take a taxi there and back. I can’t do that alone yet because she has to do the mobility deal with me where she goes with me and makes sure I can get a cab, orient me to the lay out of the church, get back to a cab pick up, etc. before I can be approved. The other problem is the cab fee each way. They don’t think much about it because taking a cab here is every day life. Spending 50 bucks to go somewhere one way is nothing to them because they have no choice. I, on the other hand, can’t see paying that every week to go to church. I can get some Helen Keller discounts to help some, but it is still expensive. I might try it once or twice since it would be fun and I really want to go to a good church, plus it could be well on the way to helping Val see me as an independent deafblind traveler. More than that, no because I would rather use the money more wisely.

Well, I guess that is it for now. I have more communication cards on travel, shopping, church, etc. make for Val’s class. As always, I am thinking of you all.

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

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

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

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

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

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

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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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By Renée Walker


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


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


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


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


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


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



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


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Touch Points
By Renée Walker

Finding Release from Isolation

As I contemplated the topic of my column for this issue, I kept being drawn back to a statement made by a friend in response to my last column on the issue of a national SSP for the DeafBlind. Her comment had been a positive one about the article, but a statement that support at home from family and friends is needed the most. This refrain I hear from many DeafBlind and actually find myself repeating often. I really felt the need to probe more deeply this issue and these feelings that are the source of this refrain. Drawing from my own experiences and statements from others, we will be exploring the feelings of isolation and loneliness of DeafBlind people and the fears of the unknown and of helplessness of many hearing/sighted as they deal with a DeafBlind loved one. Be mindful that no one is to blame for the situation we, DeafBlind, find ourselves in. Together, we and our circle of loved ones must learn to cope and enrich each other’s lives.
I can only tell you for certain of my feelings as a person who was deaf by late childhood with growing, but uncertain vision problems who seemed to suddenly become blind around age 40. My experiences and those of whom have shared the most with me are from a blinded later in life perspective. Some have more hearing than I have ever had though most would not have known the extent of my hearing loss before I lost the vast majority of my vision seemingly at once. Our experiences now come with some perception of sight and sound from earlier in life. There is an expression that goes, “Ignorance is bliss.” I have wondered if it is easier to be DeafBlind if you were so from birth or earlier in life without any memory of sight and sound. I can’t fully answer that, but I think the challenges are very different, and some such as education are even more difficult, but the feelings of isolation and loneliness can be the same. For me, I am glad that I have a perception of sounds and visual memories. As far as sound, I truly only miss the sound of music, but I still feel it and now in ways deeper than ever before. For me, the loss of vision is what seemed to be the diverted path leading to invisibility. Being deaf didn’t affect me as much possibly as part of that ignorance is bliss theory because I lost my hearing progressively beginning shortly after birth. I think more of the reason was that I could still gain so much information from the world around me visually. I was oral because there were no other deaf people in the places I grew up. My mother was deaf, and so was an uncle, but I lived far from him and saw him only on occasion. My mother and uncle grew up in a different time where being deaf was not a good thing and even a feared thing, so they hid their deafness. They were excellent lip readers and with aids could hear some environmental sounds and possibly learned to decode words although early childhood found them as hard of hearing. As with me, early hearing allowed me to develop speech with a normal tone. My lip reading skill is also excellent if I can see a person’s lips, but I only feel comfortable getting that close to my husband. In the past, people thought I could hear more than I could. With my vision decreasing slowly, I was able to go many years without facing the issue at all. At 40, I could no longer do that. Spiritually, I was prepared. God led me on a journey in the years prior that brought me so close to Him that the coming and unknown blow of being DeafBlind was dulled. I took the changes in stride and got to work learning new ways to be as independent as possible. I learned braille and ASL. I learned new ways to make sure I could take care of myself. What I didn’t expect was that those around me wouldn’t be as strong in learning to deal with me differently. I soon found myself with none of the friends I had before from my active life as a mother, teacher, Boy Scoutmaster (I had sons), church member, American Red Cross volunteer, and more. The only connection to my former life was my family and Southeastern Guide Dogs, Inc. (SEGDI) where we had volunteered as puppy raisers for many years as a homeschool project. The family struggled to deal with my changes, but they were there. The members of SEGDI and especially one, Julie, rallied around me and encouraged me as I stepped out in faith to learn new skills including getting my guide dog partner, Joey, who is a great help to my sanity. This connection helped in the initial years, but as the residual vision decreased taking away that imagined hearing everyone thought I had and the sudden death of my biggest advocate, Julie, this connection grew fainter because they truly only understood the loss of one sense, vision.
Although I lost all other connections and the seeming invisibility was almost complete, my family was still there, but they desperately wanted to pretend that I was the same and wanted me to act and do for them the same as before. My inability to do that despite my efforts led to frustration for us all. Communication is the most difficult especially now that there is no vision or hearing. The immediate family has struggled to remember many signs, so the limited communication comes from the internet-connected computer as we type to each other on chat programs that are somewhat braille friendly. Other more meaningful conversations seldom take place. I miss the closeness that I once had with my children and even with my husband. Our relationship is more based on silent care giving. We talk through the chat program about day to day issues like when the pest control man is coming, doctors’ appointments, and what technology I need. Deep conversations are few and far between. This isn’t from my husband not trying. It stems from lack of good braille skills and chat programs not being very braille friendly. My braille skills are fairly good and improving for someone who has only known braille for about three years, and I practice every day; but it will take some time before my speed and comprehension equals someone who has read braille since a child and will never reach the speed I had as a visual reader of print. Books are my love, though, so I will never give up trying. If I fault my husband and my immediate family for anything, it is for not trying to remember they live with a DeafBlind person now. You can’t leave the dishwasher door down or a pile of books on the floor or a cabinet door open. Safety in my own home should not be a worry that I have to deal with daily. For the most part though, the growing invisibility I feel and have felt is not anyone’s fault. It is certainly not mine as I have worked hard to stay independent and learn the skills to communicate with others in many ways. I don’t fault my family who are just grieving the loss of their wife and mother as I once was and who are just coping in the best way they know how with the difficulties we all face. I don’t even fault those friends, extended family, and acquaintances who have faded from view because they were too uncomfortable or afraid and feeling hopeless to know how to push through the dark silence that had engulfed and walled me in.
There is no one to blame for my isolation and loneliness, and I feel that is probably the case for many DeafBlind. Despite the new skills and technology, it is still ever present. I am not without hope for many reasons, as there are family and new friends who do try to break through the barrier. I socialize with DeafBlind friends over the internet and at the occasional social event or camp that I can attend. New sighted friends, both hearing and Deaf, in the area try to help as they can. The communication barrier is eased by those who know ASL or even some who try to fingerspell or type on my keyboard as I read on my braille display. This is support that I can use and enjoy. The ability to have a friend who can sign or type to me and take me shopping with them or go with me to a park or a local festival does wonders. The first step needed for true support is to have someone care enough to reach out. Yes, my differences can make you uncomfortable at first, but the person I am inside is just as real and human as I was before I lost my sight and hearing. This is true for all DeafBlind no matter how much they have lost in vision and hearing. The first step really is just making an effort.
Family and friends would do well to try to learn some signs or Fingerspelling. Communication is easier and faster in tactile ASL or even Fingerspelling with me because I am fast in processing. I can talk most of the time unless my asthma is triggered. That helps some people feel more comfortable with me, but learning to understand another’s Fingerspelling or sign isn’t really any more difficult than learning to express. In time with patience, communication will come easier. It is the first few steps that are the hardest. You just have to try. If you never try, you will never do. Regardless of the method, communication can happen. Ignoring or pretending I am not there is not helpful. Others will talk about me, but they will not try to engage me. Worse, some people will try to force me to respond by yelling or nudging me. Thankfully, that doesn’t happen often. Most often, I am just invisible. By just trying to communicate in some way even by printing letters with your index finger slowly on my palm, you will get the message across even if clumsily. There is no shame in that, and you will go a long way in helping to include a DeafBlind person.
Truthfully, a simple touch on the shoulder or pat on the hand goes a long way toward helping me to feel less invisible. Touch is more important than words at times, so try that first. Hugs are good, too, after a bit of time or if we know each other. We do have to do some things differently now, and family and loved ones have to, at least at first, consciously think about their activities and objects and how they might affect a DeafBlind person. People can’t just expect us to find a chair on our own in an unfamiliar place, or find the proper bathroom door in the restaurant. We need a little guidance now even with our cane skills and guide dog partners. With effort and in time, family and friends can support us in the ways we need, but allow us to be as independent as possible, too. We certainly do not want you to do everything for us. We want to do for ourselves when we can. We just need you to try to understand how we need you to support us, and we need you to be patient. Most often, we can tell you how you can help us if you will take the time to listen. Especially in the beginning, but even after time, there will be moments when we become frustrated with ourselves and our situations. We might lose our tempers, or throw a small pity party. We need you to be kind and gentle as you try to deal with our frustrations. Most of us try to deal with our dual loss of senses with some dignity, but at times, it can get to the best of us. At times, you might feel frustrated, too. We will be patient with you if you just don’t give up on us. With the supportive attitudes of family and friends, everyone’s frustrations will lessen more quickly. With a little effort toward understanding and communication, the isolation and loneliness can disappear or at least be minimal.
Proper understanding and support from family and friends is the key. DeafBlind have to learn the skills to be independent and to communicate and have access to technology, but none of the skills, technology, or state support can be fully put to use without those close to us reaching out in ways that will support our needs and differences. The dark silence that engulfs us doesn’t have to be a void. We don’t have to be invisible. It just takes true understanding and a little concentrated effort to help release us from isolation.

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

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This week’s post is the latest column I wrote for the DeafBlind magazine, Good Cheer. I hope you enjoy it, and maybe it will empower you a little bit, too.

By Renee Walker

As I get more involved in the DeafBlind community around me, I frequently get asked one important question: what do I feel is the most important thing that the DeafBlind need to be independent? That is a major question and needs plenty of thought and consideration. There are so many things to consider because the DeafBlind are scattered around the country and in any one place there are so few individual members. Their environments are drastically different, as well as, their individual hearing and vision issues. How can you answer that question where the most if not all of the people can be helped by the solution? That consideration has been what I have been trying to do before answering these people.

First, I need to derive the answer for myself, and then maybe, I can expand that answer to others. Communication for me is the biggest issue in general. I can now use ASL and braille, so that helps, but you have to have someone to sign with and have to have equipment to write braille or use it to connect with a computer. I set about finding people to interact with and getting the equipment to use braille for various purposes. Neither was easy, and still aren’t. Interpreters were the only ones I could find who were comfortable signing tactually, but there were very few of those. In fact, there was only one medically certified in the local area. The members of the Deaf community around me weren’t comfortable signing tactually either, so I wasn’t going to get any help from there. Equipment was too expensive for my budget, and for various reasons, the state wasn’t willing to give me an answer. The interpreter I found was kind enough to start a campaign of encouraging interpreters in the area to be willing to try tactual. She even brought a few around to meet me trying to encourage them to try. As far as equipment goes, I began putting away as much money as I could to buy my own equipment. In the three years that I have been working to improve my situation, I have managed to find three or four school level interpreters willing to help me for certain events such as work meetings and events such as graduation which I lead as school principal and at a few family events. Of these, none feel comfortable enough to work as a Support Service Provider (SSP) to take me shopping or help me pay bills or make phone calls. I did find one school level interpreter who is willing to do most anything I need. Other than medical interpreting, she is my primary SSP and interpreter who takes me shopping, helps me with personal and business finances, takes me to doctor appointments, and social events. This interpreter and the medical interpreter have worked hard to help the Deaf community in our area include me to some degree which has opened the door for me to have a little bit of a social life. The hearing interpreters still are the main communication point between me and any of the Deaf who still do not feel comfortable enough to actually allow much touch. They will try to “talk” with me and will let me touch for short messages like “hello” and “how are you?”, but will pull back and ask for an interpreter if more in depth conversation is desired. Many of the Deaf seem happy to have me come to the events, but they merely stand back and stare while never attempting to even say hello. I will take what I can get, and am hopeful that with time, it will improve. Other improvements come with the ability to spend about $2000.00 to get the APH Refreshabraille 18 braille display. I am learning to use this with the hearing family, co-workers, and friends in my life. I have a guide dog that helps me to maneuver somewhat independently within an environment. My skills working with my canine partner are considered to be excellent even after several years have passed since our initial training. I also have excellent cane skills, as well. I began using the cane and the dog with a bit more vision and hearing than I have now, but I continuously test my skills and improve them based on the ever-changing physical aspects. This helps me to stay as independent as possible, but I must say that as a totally DeafBlind person I must have some type of sighted or hearing/sighted help in the unknown environments that I find myself in following family, work, and social commitments. Transportation is the first aspect, of course, but to know what is happening around me and to be as safe as possible, I must have someone with me to explain the world around me. Having a small computer and braille display to communicate with hearing/sighted people directly certainly helps when the other person feels comfortable enough to use it, but there is still too much information that I miss out on without a trained SSP. Trained meaning they have been giving enough information about DeafBlindness and helping a DeafBlind person participate as independently as possible in the world that is dominated by sight and sound.

Based upon these experiences, I think I can answer this most important question for myself and expand it to others. My situation being toward the end of the spectrum as severely compromised in the hearing/sighted world by total DeafBlindness and the complexities caused by the simple, rural environment could easily be used as an initial model to understand the needs for a huge population of DeafBlind people with varying physical abilities and environmental settings. Although equipment to support communication, work settings, access to the internet and computer is vitally important to provide more independence and less isolation of DeafBlind individuals, the question is really what resource is needed the most and for the most individuals. The answer to me is fairly clear. Support Service Providers that are well-trained and provided by a well-organized agency to recruit the largest amount of individuals, train in the best methods and give the best information of the needs of DeafBlind individuals, scheduled efficiently to give the most access to as many DeafBlind as need that resource. From rural areas to towns to major metropolises, transportation is an issue from various perspectives. From not having any infrastructure for transportation to having major bus, train, subway features, the DeafBlind often need help in some way to get safely from one place to another. An SSP could provide that from an actual vehicle to guidance in safely using the transportation system of a major city. Equipment such as braille displays, TTY’s, Videophones often still require a DeafBlind person to use a sighted person to help access some web sites, programs, relay centers, etc. An SSP could provide some of that help. The agency set up to provide SSP’s in a general area would continually canvas its DeafBlind population and determine the varying needs and recruit individuals that could help serve these needs and provide the additional training that is specific for supporting a DeafBlind individual.

As I gain the equipment and communication skills I need for accessing the world, I realize that none of these can get me into the world or even accessing the world from this room in which I live completely on my own. I find too many times where I need a physical person to help me access people, things, and situations. At my current state of total DeafBlindness despite my determination and abilities to compensate well, I need a good bit of help from a person, especially when I leave this room and venture into the outside world. When I had a bit more vision and hearing, I needed other people less, but I still needed them if for nothing more than transportation. It is a fact that I don’t apologize for or regret. All people need other people. As a DeafBlind individual, I need other people more. I specifically need people who understand my needs and have the skills to meet my needs.

In advocating for one’s needs, you also have to anticipate certain questions. There is at least one more question that would come to someone’s mind if they didn’t understand my needs or if they had to justify why they should have to accommodate my needs, in this case for a trained SSP. Why can’t I just use family and/or friends? Why does someone specifically need to have some type of training in order to help me? I have family and friends who help me all the time. I appreciate what they are willing to do for me. Problems arise though when I have no one, but family or friends to call on when I need them. First, they are busy with their own lives. They can only give me small amounts of their time and at their convenience. I often miss deadlines or have schedule conflicts that can’t be resolved because there is no one available to help me at the exact times I need them. Careful planning done in advance can help alleviate some of the issues, but all too often there is no help available. Secondly, friends and family do not always know how to help me. My needs are often very unique. I have to be tapped and told using tactual ASL that someone is present and who that someone is. I have to be guided by either grasping the person’s elbow, so I can detect their not so distinct and sudden movements; or I have to command my dog to follow them. Without sight and sound, I cannot negotiate intersections safely even with a guide dog who is trained to protect me, but should not be relied upon to decide when it is safe to cross a street. A sighted person is needed to inform me of the traffic flows and when it is best to cross. I also am particular about the way I want certain things done, and I want to make decisions for myself based on full details of the situation and/or the environment that I am in. I don’t want things done for me. I want to do them after I have been fully apprised of all information. Friends and family mean well, but often help too much, or help too little because they don’t know what to do and are afraid of making a mistake. Either way, they mean well, but they can cause problems for me. One of the biggest problems is that friends and families do not understand how much and what kind of information about the surroundings and the situation that they need to give me. They don’t realize that I want to know not only the important and obvious details like how many people are present and who they are, but also, describing the setting of a room and in general, the tones of voices and body language clues given. Most people use this information daily to decide how to react to a given situation, but aren’t even aware of the fact that they are using all of those details and wouldn’t be able to describe them to a DeafBlind individual who just like them need the information to better understand what is going on around them and decide how they wish to respond. A trained SSP has been given knowledge that helps them know better about what is needed, and although the needs of individual DeafBlind vary, has been given tools to help them quickly ask and evaluate what is needed. This training doesn’t go to the extent of a certified interpreter, of course, but does give skills that better help a DeafBlind individual access the world around them. Overall, the main goal of a trained SSP is to communicate in the DeafBlind individual’s primary mode of communication all the aspects of the surroundings and let the DeafBlind make decisions and interact with the world as independently as possible for that individual. That takes a lot of skill that is best derived by the services offered by a trained SSP. Trained SSP’s just can’t be replaced by caring friends and family no matter how hard they try.

Now I have answered the question for myself and expanded it to a generalized population of DeafBlind individuals and even given some basic arguments to support the justification to those who might require it. I can more confidently answer the people who ask me. Now I ask that you, my readers, do the same. Address this question to yourself and based on your experiences even expand the issue to the wider DeafBlind population as to what might be the most needed resource provided for all DeafBlind individuals. Once done, with confidence, you can speak out on your behalf and other DeafBlind. Take this advocacy seriously, and write, call, or email your government representatives both on the state and federal level. Put your thoughts out there in internet blogs or letters to family, friends, businesses, etc. Let’s educate everyone on what we need now to be more productive citizens as independently as we each can be. We not only should be active participants of our world, but we can be with the right resources.

If you would like to know more about SSP’s, you can visit the American Association for the Deaf-Blind’s website, http://www.aadb.org. If you would like to express your thoughts or questions to me regarding this article, you may contact me at rkwalker@wynfieldca.org, or you may write me at 143 Williamson Dr., Macon, GA 31210. You can also follow my blog at http://www.deafblindhope.wordpress.com.

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