Tactile View

Standing Up for Yourself!

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ASL Sign for Support/Advocate- two closed 5 handshapes one on top of the other with top hand palm inward toward signer, and bottom hand palm facing left.
ASL Sign for Support/Advocate

Over the years that I have written this column, I have often shared my struggles with getting medical care and communication facilitated by Tactile ASL (TASL) interpreters. It is an on-going struggle that can be very frustrating. Often you feel like you are fighting a losing battle, but then a breakthrough happens, and your strength to fight is renewed. There is no way to describe self-advocacy other than It is a fight, but a fight worth fighting. Truth is, everyone needs to self-advocate because no one is going to win the battle alone. we each have to fight our individual battles, but ultimately, we are also waging the war together with others who are self-advocating. We help each other as we make our needs known. Anyone can self-advocate. You just need to learn how. Fortunately, there are Deaf and DeafBlind people out there who have been learning how to self-advocate the hard way that are now teaching others how. I recently joined those ranks.

A few weeks ago, I attended a state workshop here in Georgia taught by Bren Yuko Yunashko called DeafBlind Self-Advocacy Training. A Deaf Self-Advocacy Training class was held simultaneously at the same location. The curriculum was developed and tested by the National Consortium of Interpreter Education Centers over a 6 year year period culminated by a Train the Trainer session in 2011 at Gallaudet University. The class I attended was to give us the training as an overview and prepare us to teach the course to other Deaf and DeafBlind. That is our mission here in the state of Georgia. We want to put the power to create change into the hands of the individual.

The course is based on an “Of, by, and for the Deaf, Hard of Hearing, and DeafBlind” philosophy. It is important for the course to be presented by the very people who understand and have faced the same struggles as the audience. The course is made up of 7 modules to give you the skills and the knowledge to self-advocate. The modules are designed to help the student define self-advocacy, understand the ADA law, and introduce self-esteem and self-determination as the mindset that people need to have to achieve self-advocacy goals. The modules also give better understanding of the roles of interpreters and the services they provide in live and video remote services. all of which are important facets to understand and know when self-advocating.

In addition, discrimination is discussed and techniques for self-advocating for reasonable accommodations are presented in detail. Students also learn how provision of reasonable accommodations benefits the hearing, as well. The course provides a curriculum packed with important knowledge and time-tested strategies and solid resources to best empower you to fulfill your self-advocacy goals. Learning to face the struggles with success is the reward for you and also others who will come behind you.

I highly recommend this course. My own course was not only informative and self-empowering, it was also a great deal of fun as I strengthen friendships with other DeafBlind people I seldom see and met new ones who are now forever friends. I can better my life and help others to understand my needs which will only increase my participation and enjoyment of life and its many activities. Do yourself a favor, and ask your state Deaf and DeafBlind services agencies about this National Consortium of Interpreter Education course. If they don’t have it, begin your self-advocacy by asking that they bring this course, Deaf/DeafBlind Self-advocacy Training to your area. Let’s work together toward change for all of us. We deserve it. We can get it. We just need to know how to best to teach others how to give us what we need.

Why Don’t They Understand?

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I have written many times about my struggles with the medical industry not providing interpreters over the years. I have talked and educated doctors, hospitals, and everyone I meet about the needs of the Deaf and DeafBlind regarding compassionate care and the need for interpreters. I have fought through legal mediation programs provided through my state’s ADA advocacy office, as well. You would think the message would sink in at some point. This week proves to me that very little has changed.

First, I had a follow-up mammogram at the hospital in the nearby city. A few months ago, another lump was found in my breast. I have had many over the years. I was told then that I would be called the next day through their rapid results program because I had had all of my previous scans with this same hospital, and I gave them a telephone number and a passcode to prove it is me that they  reach. Two weeks went by, and I had heard nothing. My doctor called, and said I needed to call the hospital regarding my scan. I made a few attempts with IP Relay which is another form of Deaf relay where I can type to an operator who reads my message to the other caller and then types back to me the caller’s response which I read in braille. I get a written transcript of these calls for future referral or even evidence, if needed. The receptionist at the office refused to take my call. A couple of days later, as I was still working to find a way to get the office to accept my call, a letter came informing me that I had a suspicious lump and needed another scan after Christmas.

That recheck was over two weeks ago. Again, I was told that I would be called the next day. Again, I wasn’t. I mentioned that day that they had refused my relay call before, and that I needed them to accept the call if I had questions or needed information. I was assured that they would. Two weeks later, I made the call. After a couple of attempts, they finally accepted my call. I asked for my results. I was told that my results were normal. I was confused, since I knew I had a lump. Of course, those can be fluid and go away on their own, but I could still feel mine. I questioned the person to clarify. “What about the lump I had that needed to be checked? Do I have the lump still or is it gone?” The reply was, “No, you didn’t have a lump.” I then further questioned why they didn’t call me. “We tried, but your husband’s voice mail was full.” That was a lie. My husband hates talking on the phone. He seldom gets phone calls except for these types from doctors or service people and there aren’t many of those. I told her firmly, but as politely as I could that wasn’t what happened. I then asked about a letter that should have been mailed long before now, at least. “Oh, we mailed one the next day, but it was returned.” Uh, no! She read the address which was correct. Mail from them has come before correctly. Yes, I am aware that mail can get lost or a stamp fall off, but the chances of that happening the first time and this time and with the lack of confidence in the fact they tried to call (We gave them multiple numbers to me and my husband. They didn’t try me at all.) She assured me she would send a letter that day. I thanked her, and I tried to explain how there was anxiety surrounding this issue for any woman and these issues of not communicating properly only worsened that anxiety. She apologized for the inconvenience. A few days later, a letter arrived. It stated that I had a suspicious lump that needed further examination, and I need to make another appointment. Confused? I know I am. And precious time ticks on.

In another separate, but related issue, I had to return today to my gynecologist for an ultrasound for cysts or lumps on both ovaries. This was another follow-up on this and was set a few months ago. An interpreter was present when the appointment was scheduled and approved the date and time, but stressed that the paperwork had to be sent to her prior to confirm. We showed up today, but the interpreter didn’t show. I began to get nervous, though I have a general idea of what was to happen, because I can’t understand specifics, I can’t ask questions, and feared not getting full understanding if something had changed or more needed to be done. The nurses, nor the doctor seemed to think it was a big deal. “We don’t know what happened. The interpreter should have been here.” “Did you send the paperwork to confirm?” “Well, I don’t don’t for sure, but the interpreter should have been here.” I made it very clear that this interpreter is very professional and dependable. If she couldn’t make the appointment, she would call, but the appointment had to have been confirmed by the office to ensure her presence for the appointment.

I was given a choice. A decision had to be made. Would I stay and do the appointment without an interpreter, or would we need to reschedule? Neither option was a good one. Rescheduling was not good because my husband took off work to take me, and we live 50 miles away. This was not an short journey to make. My husband doesn’t complain, but he has a hard time keeping much leave due to having to take time for his appointments, work-hour only errands, and my appointments. Coming back really wasn’t fair to him. Doing an appointment without an interpreter is never a good option, either. Though, I know generalities of how the test is done, specifics can be different with different examiners. More than once, too, I have had to tell the examiner some fact about me that made a big difference in what results would be received or treatment would be done. For example, at this same office, I have had to tell the examiner before that I was told the cyst was high up when the examiner told me through an interpreter that she could no longer find a cyst. I immediately told her the information I knew, and the examiner made adjustments and found the cyst. If I hadn’t known the examiner was saying she couldn’t find anything, the appointment would have ended with everyone thinking the cyst had gone away on its own, and I wouldn’t have been seen again for at least a year during which time a lot of not so good things could happen. So as the expression could be said, though anxious and it was showing, I sucked it up, put my big girl panties on, whatever, and went through the appointment without an interpreter. Knowing from past experience, I mentioned right off about the main cyst being high which was a good thing I did. I had questions about my conflicting mammogram results, but I couldn’t do anything about that today. My husband tried to mention it, but he wasn’t sure what to say. Without an interpreter, I couldn’t get or give proper feedback. Again, precious time ticks on.

Still, after all this time. Few people understand. Too many people think I shouldn’t need an interpreter. Going today without one actually feeds that misinterpretation, too. They say, “Well, you didn’t need one for this appointment. Let the doctor look at you. You don’t need to know what the doctor says now. Your husband can tell you later.” I try to tell them to put themselves in my place, and see how they would feel being in the Dark Silence with little to no way to know what is happening, understand what is being said and done, contribute information that could lead to a better diagnosis and treatment plan, get questions answered, have anxieties relieved, make my own decisions about my own body and the care I receive, feel independent. Few people can truly do that. They just don’t see the big picture. They can’t imagine how they would feel or what they would need if they were Deaf or DeafBlind. They can’t see how it really is a big deal.

Interpreters are not just a good tool to have. They are a MUST HAVE! Interpreters allow me to hear your voice, and they allow me to use my intelligence and my voice. I needed to try again to get people to listen, so I’m back writing. Now, I have to work to make the doctors understand, as precious time ticks on.

Day 18: Time to Learn How to take care of our Dogs, not Just Work Them.

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Well, I awoke at 2:30 drenched in sweat. Sheets were wet, so I check my sugar level. It was 121. No problem there unless it went down to far before dawn, but I didn’t think so. Finally, I got back to sleep.
Before breakfast this morning at 6:00 am, my sugar level was 130. There is the “Dawn Phenomenon.” I knew it would kick in.
Well, today is supposed to be DTC in the morning for morning routes in the neighborhood. We will eat at the mall in Bradenton. We will do afternoon routes there. This evening at 6:00 is the CPR we thought we were going to have Monday night.

We did obedience after breakfast. Joe did better with the distractions today. We then got our harnesses, “busyed” the dogs, loaded up to go downtown.

The routes we did at the DTC were in much busier streets and we went a good couple of miles in the heat. We left early trying to beat the heat and the humidity, but that is hard. I feel fine as far as the heat goes. It was only 94 in Bradenton today. Scott said it reached over 100 in the Macon area plus the heat index. I definitely am glad I am here as far as temperature goes. Joey hit the curbs right on the mark every time. He took me around poles and potholes I didn’t even know were there. Kate told me later. The only thing she missed was a palm tree branch sticking out into the sidewalk area at about ankle level. I hit it and snagged up. Kate caught me before I hit the ground. I said, “No” and popped his leash back in correction and quickly relaxed it. I pushed the branch with my foot and said, “Watch.” We then turned around and reworked it. It stopped for it, so I could scan for it and step over it. I praised him very well. His little tail began swinging wildly back and forth. I wish I could get a picture from the rear when we near a “curb”. Kate says that Joe starts wagging his tail in anticipation as soon as he spots something. He stops and wags even faster as I search. I better not forget a “party” when he is so excited about getting it. I would hate to disappoint him.

We went back to the Bradenton Mall for lunch and afternoon routes. After lunch, I waited for others while they did their routes. I finally asked a new trainer, Lynn, to take me to the restroom. Chris asked to go with us. Lynn quickly took off with Chris and Xcelerator behind her. Shoppers got in my way, so I lost sight of her. Joe however, took me right on behind her. I got confused in the maze of hallways and almost when in the men’s room behind Chris, but I finally made it. When I left the women’s room, I realized that Lynn had left me. As I stared at the fuzzy walls and shadows around me, I panicked. I couldn’t breathe, and fell back hugging the walls. I had no clue how to get back out. Now this might not sound like such a big deal to anyone, but me. However, I can’t hear much of anything and now I found myself surrounded by passageways alone. Fortunately I had prayed earlier about just these kinds of moments. Finally, words managed to seep through the fog in my brain. I could hear Kate telling me to think about where I was. Now align yourself with the wall and follow it to the end. I did and found myself at an intersection with hallways coming in all directions. I almost freaked again, but then a thought came. Ok. You came out of the restroom. Anyone coming past from there will be heading out, or anyone going in the opposite direction will be going to the restroom from the outside. Wait and follow them. Pretty soon, someone came by heading to the restroom. I went in the direction they came from. Great! It was just another passageway. I followed the wall to the end and rounded the corner. Ah! Another hallway or something. Ok, now there were choices in directions. Ugh! I was just about to panic or being unchristian like or something when someone rounded the corner. Oh, thank you, Jesus for that sign and keeping me from temptation. I followed the wall in that direction and eventually the light brightened somewhat and I heard the roar of the mall hitting my ears. I took a deep breath. I, of course, had no clue which way to go. I could only hope. Uh, Joe,find the seat. Off Joe went as followed his lead and prayed he wasn’t just going after a piece of hamburger under a counter somewhere. We made twists and turns, brushing near but not touching other people and trash cans, etc. Finally, he stopped and I realized, “Hey, Joe did it!” I cried with sheer delight. I was exactly where I started from. Now there were other people sitting in the chair, but it was the exact chair. Fortunately, Jerry was in the table at the left of us waiting for his route, so I sat there and told him of my wonderful experience. Joey is perfect for me… No doubt in my mind.
Our routes were cut short a little later. One of the dogs cut his paw on the escalator, so some left immediately. A few others waited until Katie returned with her students. I and Crystal did not get to go on the route and do escalators today, but I didn’t care. I had achieved something major here. I could wait til later for escalators.
We arrived back to the school to find out that Schotzie’s paw was fine. It bled some, but was taken care of by the on call vet. Nancy was excited as well. She told us how she had been waiting outside Dilliard’s on a bench as another student was reworking some steps. A group of school children came by and immediately started yelling, “Look a dog, a dog!” Many came running up and tried to pet the dog. Of course, Cole didn’t mind. He was in a downstay beside Nancy. He immediately wagged his tail. Nancy politely told them that Cole was a working dog and could not be petted. The children, being about 7, began responding that he couldn’t be working because he was just lying there on the floor. With a chuckle, Nancy explained what she meant by working and how petting him could distract Cole from his duty of guiding and safeguarding her. Nancy was very pleased when they obviously understood and wanted to know more about guide dogs and how to treat blind people and working dogs, etc. Nancy spent about 15 minutes talking with the children. They all promised to be careful when they saw a working dog not to distract it from its duty. Nancy was quite pleased with herself, and we were pleased with her as well.

After supper, we had a class on taking care of our dogs. We learned to use tick preventative once a month and heartworm preventative, too. We brushed our dogs’ teeth and cleaned their ears. I have been concerned for Joe. His ears keep getting dirty despite me trying to clean them out one other time this week. I used three gauzes to try and get the dirt all out. After that we even learned how to do mouth to snout CPR and rescue breathing. Rita Princivalli, the graduate director, taught the class. She had a large stuffed Dalmatian with brailled arteries and sacs attached to a hand pump to help us learn CPR. It was incredibly fun and useful.
I finished at 7:30 to join Scott on X-Box Live for our 20th Anniversary date. He sent me to our private website that has screen captures of our house security camera system. On the rear, the camera showed a large sign with the words: Happy 20th Anniversary. I love you scrawled across it. That was a perfect present being so far away. We talked until about 9:00 when I had to go to bed.
I am just finishing this up as I get really sleepy. See you tomorrow.

Day 17: Trouble on the Road

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We had fun, yesterday, but yes, a very long day. To top it off we had a fancy meal with some dignitaries last night. I felt like a monkey in the zoo again. Only a few came over and talked to us and then they had us spread so far from each other that we couldn’t talk. All of us said we were miserable. Even Chris, the important one, said he was scared. You know it had to be bad. Tampa was great. I was scared at first, but Joe took over and Kate was there to help me when I got confused. Pretty soon, Joe and I were going around like we had lived in Tampa all our lives. Well, almost… I had asthma bad toward the end though. I sat in the front of the van on the way back and nebulized with the battery plug thingie. We had an interesting trip back, too. We were about halfway back when Kate suddenly pulls over at an off ramp where the lines mark between the ramp and the right lane. We had smoke come out from under the van majorly. It looks like Kate noticed something was wrong very quickly, so no danger at all. They quickly unloaded everyone and ran us to the other van in the back. They took us one at the time, so there was no waiting on hot pavement for the dogs. I was last. Chuck took Joe for me because with me in the front Joe had to get in and out the folding doors. Kate helped me as I was still wheezing. We all went sighted guide because we were very close to traffic on both sides. After we were all crammed in, we came home with no further incidents. The van was picked up and took for repairs shortly after we left. I took a pic of us all crammed in the back. There were dogs, students, and trainers all sitting or standing crushed together. Everyone rubbed their dogs since they had to sit and be close to another dog and person. It wasn’t bad. Everyone laughed and had a good time. The dogs slept in whatever position they were in. They were exhausted.
When we returned and had watered and relieved the dogs, we all retired to our rooms because the dogs needed a nap. I finished by Sherlock Holmes book and petted Joe while I nebulized.

Later we fed the dogs and waited to eat with the fancy folks. I got out of there as soon as I could. It was 8:00 pm when I finally got free. By then Joe and I were exhausted and I was going to shower. Well, then Misty and Nancy came in. Misty had learned a neat litttle tidbit from a puppy raiser who knew her dog and mine. Misty’s dog Shotzie is Little Joe’s brother. It is obvious that they remember each other. We had already remarked how much they like each other. As we talked about other things and laughed, the dogs slept. Joe and Shotzie moved close together and snuggled together. You couldn’t tell where one dog started and the other ended.
As we were talking, Kate came in a said a rough storm was coming, so we might want to take our dogs out. We all got up to do so. I got dizzy and fell down. I realized that I now felt really bad. Kate said she would take Little Joe out while I tested my sugar level. It was 60. My sugar level had been high before dinner because of the med treatments all day. Kate brought me some M&M’s and a fudgecicle from the kitchen. I was fine shortly.
Anthony joined Nancy and I in my room later. We talked and laughed until almost 11:00. This was not exactly what I had intended, but it was fun. We tested my FM system as Anthony walked around the building in the dark whispering into my mic. I repeated everything to Nancy. It was hilarious as he found one wall with his head, tripped over an extension cord, spilled water on the floor, etc. Anthony is totally blind and has been since birth, so lights wouldn’t have helped him. He is really a big clown, but he knows when and when not to do it. That is better.
Well, I am going to sleep now. Good night.