Tactile View

How can I Self-Advocate?

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First, I want to thank the readers who have written into the post office a few times and specifically mentioned loving not only Good Cheer, but my Touch Points column specifically. It really touches my heart to know that you are enjoying my articles and that it helps people in some way. Keep writing and even suggest things that you want to know about because either me or someone else at Good Cheer will work to cover any topics that we can.

As I have talked about before, I took a training course on DeafBlind Self-advocacy last summer. I actually had a longer course which taught me how to teach the course. The course covers very important skills that we all need, but especially the Deaf/DeafBlind. I want to give you an overview of the skills in hopes that you can learn something to help you better self-advocate and lead you to find out where you can take the course in your locality.

What is Advocacy? Advocacy is about requesting and getting the support and education needed for life. It is all about making the things you need happen. How can you advocate? Know your rights. Get support. Contact the people involved. Talk to the media.

How is self-advocacy different? Self-advocacy is about doing that advocacy for yourself. You must know what you need. Why is self-advocacy so important? It helps build confidence. It gives you more opportunities. It also gives other Deaf and DeafBlind people more opportunities because you educate people and organizations about being aware and doing what is needed. It gives you equal access, and teaches hearing people something new.

There are seven steps to self-advocacy. First, you must remember to always request specific accommodations. Tell people exactly what you need to have equal access. You can’t be vague or unsure.  Second, know your rights. To do that, learn about the ADA and your own state’s laws, as well as other applicable laws or policies that might affect your situation such as Air Carrier Access Act for air travel. Third, once you have learned, educate others about those rights under the law. Don’t assume that the people you are dealing with know your rights. Often they don’t. Those in management might, but not always, explain your rights to them. Fourth, when dealing with others, know who they are and what their role and what level of authority they have. Also, know about the agency or organization and if they are capable of providing what you need. For instance, how large or successful is the business, is it federally funded, or is it a religious organization? The obligation to provide reasonable accommodation varies based on the nature of the business. Fifth, once you have done your research, follow procedure as the business has established and do so in advance being mindful that some accommodations such as a qualified interpreter take time to schedule.  Sixth, be tactful and courteous which involves knowing when to pick your battles, educating, and persuading. Be consistent and confident avoiding anger and negative attitudes and comments which might be the hardest thing to do when you are being denied something you need, but it doesn’t help really. And seventh, be willing to compromise as the situation demands. Consider other options if your accommodation cannot be granted. You don’t have to settle for less than what we actually work for you, but be open to other options that might work, though, not preferred. If all of this fails, it might be time to consult a lawyer.Green Background with green tinted American Flag and the whit text "Keep Calm and Know Your Rights

The steps for self-advocacy are easier than they seem and will get easier as you practice them. Use your failures from one experience to another to improve your self-advocacy skills. I have been forced to self-advocate many times. I can’t count the number of errors I have made including becoming angry and making comments that didn’t help me get what I needed, but I keep at it. I have now succeeded more than I have failed and along with this class that gave me these specifics, I have a good plan that helps me to stay focused and make my case more accurately and more effectively.

The Deaf or DeafBlind Self-Advocacy Training course curriculum is provided by the National Consortium Of Interpreter Education Centers. The course is taught by Deaf and DeafBlind instructors and is usually offered by state Deaf and DeafBlind agencies or other regional or local agencies. It is worth your time and effort. Contact your local or state agency to sign up or ask for this course.

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.

DeafBlindness and Grief: Missing Out on Saying Goodbye

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There are many friendships that fade away over time and space. There is nothing wrong with that. Life is a book with many chapters. As life goes on, so do the characters in our story. If we are blessed, we might have that one friendship that lasts throughout the story even when time and space separate your moments together along the way. I was blessed with such a friendship.

We saw each otheText in multi-colors: Best Friends Are the people in life that make You laugh a little louder, smile a little brighter, & live a little better.r daily for over ten years as we worked together. A change of job did little to limit us as we talked each day and often saw each other on weekends and always had our bi-annual yard sales to make sure we had plenty of time to keep up with each other. As my friend developed worsening diabetes, she lost her eyesight and then her kidney function and was on routine dialysis for year after year as she waited for a kidney transplant that never came. We saw each other less, but we still kept in contact. Once, she was hospitalized and death seem near as she had an infection in her foot that resulted in a few amputation surgeries. In ICU, only family members were allowed, but my friend, knowingI would be coming, lied telling the staff that her sister would be here soon and to make sure I was let in. As I arrived and asked for her by name I was told, “Oh, yes, we have been expecting you.” I stayed with her the whole time until God chose to heal her giving her several more years.

Finally, as my DeafBlindness worsened to the point that we had no means to communicate as she didn’t do computers, and I no longer had technology that would let me use a telephone, our contacts were less and less frequent. She always joked, though, that we had a mental connection to each other as we each instinctively knew when the other needed us. We had made sure when we felt the call to answer it no matter what it took. In the last five years that became almost impossible for me due to my DeafBlindness and the lack of a relay system usable for the DeafBlind. I continued to send messages through hearing-sighted people, but I don’t know how many of those she ever got. I prayed for her almost everyday.

The last time I got that feeling that she needed me and felt that intense need to pray was in March of 2013. I tried sending messages by asking friends to call her number. They left messages. We didn’t hear back. Finally, in June between my wedding anniversary and my birthday which is the 22nd and 26th respectively, I felt a peace every time I thought of her. I figured all was well in one way or another. I seldom mentioned her to my husband anymore. I just felt she was alright. The friends I asked to call left messages, but I heard nothing about my friend again.

On Valentine’s Day 2016, I finally felt able to try again to get the answer that I think I already knew. My husband checked and found her obituary on the internet. She died on June 20, 2013. You read that right. She died almost three years ago. She died when I finally felt at peace and didn’t think I needed to reach out anymore. I guess we did have a mental connection.

I write this now as her birthday approaches. It was that day, April 15th, of every year that I always made a point of trying to call her no matter what. The last year or two she was alive I wasn’t able to, but I didn’t forget. There just wasn’t anyone available to make a call for me.

Helen Keller wrote once that blindness separates a person from things, and deafness separates people from other people. I have to add that the barriers are amplified when you are deafblind. Deafblindness separates you from the world like a vast gulf of Dark silence.

You can reach out from the Dark Silence and find the world, but it takes not only you being willing and brave, but others who are willing and brave to go the distance to touch you. Those willing and brave are few. We must cherish each that  do.

So, I find again that I must grieve differently in the Dark Silence. We can  miss both in times of life and in times of death. In bringing us access to the world, some things have improved, but I dare say there is still much for which to fight. Everyone deserves a friend like I had, and a way to always stay in contact and share.

Happy Birthday, Mary Alice Lunsford Click, my best friend, my “sister”. I miss you, but I will see you again someday for I know you are Home safely.

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.