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TOUCH POINTS

by Renée K. Walker

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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Touch Points

By Renée K. Walker

A Tribute

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

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

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

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

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

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

 

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

 

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Touch Points

By Renée K. Walker

To be Allowed to Understand

Time for another touch point, and accessibility is still on my mind. Accessible technology is still a big interest, but this time I am thinking more about events and activities. I sit in this room in this chair at my computer trying to access the world so much that I really want to get out sometimes and do something. I did that recently and wanted to share how it went and how easy it can be if event organizers and businesses will just take the time to think about accessibility.

With the holidays approaching with gifts to buy and new resolutions to make, I decided to use some of my saved money to buy myself a gift, and hopefully, keep a New Year’s resolution to get active again. I joined a gym after finding a Support Services Provider (SSP) who could sign; I approached the largest gym facility here that is also a division of a medical facility to apply for membership. The first obstacle was to convince them that they had the responsibility to provide a qualified interpreter for some of my visits such as the first meeting and meetings with a personal trainer. It took a bit of effort, but after education and effort, an interpreter was provided. My first visit was good, though tense at first, as we initially went back and forth on how to best serve me. The facility requires someone to be with me at all times, but I in agreement with that. I am becoming more and more independent, but I still have anxiety issues when out in the public alone. Communication with staff was my biggest concern. Anytime I meet with my personal trainer, I get a qualified interpreter as mandated by the ADA law which specifically mentions gym facilities. For most days, I now can get around independently even if someone else is not with me because we took plenty of time with staff initially to orient me to every inch of the building and its facilities. The staff didn’t quite understand that at first, but they helped me graciously and found it was quite easy on their part. An SSP will provide the means for communication otherwise, if the need arises. I also opted to have massage therapy (my favorite part, of course) provided, too. This was the part that I was most worried about. Apart from the apprehension one might feel with the touching initially, I was most concerned about communication because it isn’t a setting that they want another person in the room due to privacy concerns. The therapist works to keep you covered at all times, but as you move from front to back, someone sitting lower and to the side of you might see more than you want them, too. I understand that, but I was concerned with how the therapist would communicate or even if the therapist would be willing, since it has to all be done tactually. With the help of my interpreter, we developed a set of signs both ASL and made up signals that were easy for both the therapist to remember and me to understand. The therapist was perfectly willing, and the first session went very well. I loved the massage. My feeling of insecurity in regards to the touching quickly dissipated due to the procedures and professionalism of the therapist, and my body never felt so relaxed. I highly recommend it for anyone, but especially DeafBlind people who live stressful lives just because they are DeafBlind. I can say that I have been several times now to exercise and gotten one massage. Due to the understanding of the staff and my SSP, I will be able to keep this New Year’s resolution with the best Christmas present that I gave to myself.

Now my new experiences didn’t end with the gym. I decided that I wanted to experience some Christmas celebration again other than my own at- home celebration. First, I attended the local replica and live play called “Walk through Bethlehem” presented by a local church. This church already provides interpreting services for the deaf members of their congregation for church and other services including this activity. This year they provided two tactual interpreters to help take me through along with my family. The interpreters were wonderful and really helped me understand what was going on. I had attended this event several years ago as a sighted person who couldn’t hear, but I also couldn’t sign. I thought I understood everything. I know now that there was a lot of subtle and inspiring information in the various dialogues that I had totally missed without the ASL knowledge and interpreting. This year I also was provided tactile access to the event making the experience even more enjoyable and fulfilling. I was allowed to touch the fabricated city walls, Roman soldiers’ uniforms, bread and other foods, and the baby Jesus who was to my surprise a living child kicking his little feet in the manger. I touched the nose of a camel and felt the heat of an open fire. The actors made the extra effort to provide this access to me, not just my interpreters. Many told me later that they had never done anything like that before, but they thoroughly enjoyed the experience and learned a lot from it. I know that their effort was extremely beneficial to me and much appreciated.

My next event wasn’t as accessible as these other experiences, though. I attended my church’s Christmas Eve service which included music, message, and a live nativity. I knew before I went that accessibility would not be present. My church provides an interpreter for the Deaf for a Sunday morning service, and my Deaf friends copy the interpreter’s signs to me tactually. Sunday morning service is the only time my church considers providing access to their events for their Deaf members. I think they care, but I don’t think they fully understand the needs of me and other Deaf members. I attended because my hearing family members would enjoy the service as a part of our Christmas activities and as another means of keeping Christ the center of our celebrations which is important to us. I could feel the music from the full choir, orchestra, and band, but I had no other means to understand the message or experience the live nativity. My husband tried to help me get close to the nativity to help him at least better describe the scenario and possibly allow me to ask to touch what I could, but no one would let us even get close as they crowded to see for themselves. He couldn’t even see the actors or scenery to describe them to me. Of course, I knew this beforehand, so I did not complain, nor am I complaining now. My family enjoyed the event and worshipped through song, prayer, and message. I worshipped through the feel of the music and in my own thoughts and prayers. More importantly, I just enjoyed being there to share it with my family as opposed to waiting at home alone. Sometimes that is enough in light of the struggles of being DeafBlind.

These new experiences just emphasize to me the importance of accessibility. I think more understanding and a willingness to try would provide us all with more meaningful experiences and more fulfilled lives. I will do my best to continue to speak out in love whenever I can. I hope you, my readers, will do the same. Together, we can build a bridge of love which will improve the lives of all.

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

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TOUCH POINTS

By Renée Walker

 

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

 

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

 

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

 

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

 

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

 

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

 

 

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

 

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Touch Points
By Renée Walker

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.

TOUCH POINTS
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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I am Associate Editor of Good Cheer, the international DeafBlind magazine. I write a column called Touch Points in each issue. Here I will post my columns after they are published in Good Cheer.

Touch Points

By Renée Walker

A Day at the Movies

 I had looked forward to this day for several months, since I had heard the opening day announcement. Even as old as I am, I love the stories about a young boy whose mother gave her life protecting his. I had read many of the books in print until my eyes finally gave out. I then began learning braille and finding these books printed in braille gave me the incentive to work hard. Going to see the movie based on the 6th book, Harry Potter and the Deathly Hallows, was going to be difficult at best. I knew that I wouldn’t understand much with almost no hearing even with an FM system and a very small peripheral field and blurry acuity. I really wanted to try though because I had enjoyed the first couple of movies with my vision. We searched for a theater that provided closed captions or descriptive audio. I had never seen any of this technology and wasn’t quite sure how it worked, but I was hopeful. We finally found a theater that provided both of those technologies. The theater was almost a hundred miles away in South Atlanta and called AMC Southlake Pavilion. My wonderful husband agreed to take off work to take me. We didn’t understand how to figure out what movie was currently shown using the technology or times or anything actually, so we just picked a day and drove up there early in the morning expecting to have to get tickets for a particular showing and go shopping until time. For me, it was worth it.

The day finally arrived. We loaded up Joey and ourselves and drove the miles to the theater. We arrived to find that the Harry Potter movie was not available with the technology at that time. I was disappointed, but I kept my chin up. My husband talked with the manager, Janine, who carefully explained to him the workings of the web site and the technology in general, so we could plan better next time. Since Harry Potter would not be scheduled for the accessible theater, we decided to come back later that morning and see it anyway. I wasn’t interested in the movie playing in the accessible theater. I don’t know what all my husband talked about with Janine, since I couldn’t understand anything and Scott doesn’t know sign except for trying to learning Fingerspelling. Later, he said that he had just mentioned how I missed the movies. Janine got on the phone and talked to someone for a few minutes finally saying, tell someone to swap out the current movie in the accessible theater for Harry Potter. Scott turned to me and explained the gist of what was happening. My heart nearly jumped out of my chest with excitement. I tried hard to fight the tears welling up in my eyes, but the tears betrayed my emotions as a tear rolled down my cheeks. Scott and Janine looked at me. Scott asked if I was ok. I said happy is all. Scott told Janine how so much has been a fight since I lost my sight as well as being deaf. Everything from taking my guide dog into restaurants to seeing doctors with interpreters to getting accessible technology to help me work and communicate has been a battle. It was a wonderful feeling to have someone be so nice to me. I thanked Janine, and she touched my shoulder gently. It was easy to tell without sight and sound that she was saying she was so glad to help me. Joey went straight to her and wagged his tail. Janine leaned down, and he slurped his tongue across her face. He doesn’t do that while working usually. Scott was quickly apologizing, but Janine said she loved it, and she rubbed Joey’s ears.

A short time later, we were sitting in our movie chairs with popcorn loaded with butter and cokes sitting in the arms’ cup holders. I had one cup holder filled with a flexible stand with a tinted but see through piece of plastic attached extending in front of my face. I also had the descriptive audio headphones. As the movie started, it took a few moments to adjust the plastic just right for me to see the captions with my field of vision and to get the headset adjusted. It took a few more to figure a way to shift from the screen to the captions to keep up with the action. I finally decided to turn on my FM because the headset wasn’t helping at all. My FM had never worked to pick up anything in my area theaters, but I figured it wouldn’t hurt to try since I was some place new. I touched the buttons to turn the FM on and press the correct order to change the frequency when suddenly noise. I actually jumped. I couldn’t quite understand words, but I kept concentrating until a few words began to come through the crackles. It was obviously the description of what was going on the screen.  I relaxed and focused my eyes on the plastic screen and scanned until I found the captions. By concentrating on the noise in my head and the fuzzy letters forming in front of me, I actually began to get the story. Of course, it helped to have read the story before. I was totally amazed. I was actually enjoying a movie for the first time in ten years thanks to some wonderful technology.

As we left the theater, I was walking on air happier than I have been in a while. Janine met us out front and asked how I enjoyed the movie, but said is your face evidence of your enjoyment? Scott translated, and I nearly jumped up and down signing and speaking, “Yes! Yes!” I thanked her again, and she said, “No problem. You and Joey have just made my day! It is so good that the equipment really helps to bring a little fun to people.” We left, and I thanked God for my blessings. It is nice to know that this journey with DeafBlindness won’t always be full of battles.

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