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How can I Self-Advocate?

January 17, 2017 by Renee K Walker Leave a Comment

 

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!

January 17, 2017 by Renee K Walker Leave a Comment

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.

Not Really Goodbye: A letter to My BFF

April 15, 2016 by Renee K Walker 2 Comments

Two women, a blonde in a yellow tee with a bow and a brunette in a lime green tee, with the text Best Friends? She's more like a Sister. Two Rays of SunshineI wrote yesterday about my best friend. Today is her actual birthday. I decided I had more to say just to her. I can’t say them in person now, but I can share them here.

Happy Birthday, Mary Alice Lunsford Click. I didn’t get to say goodbye to you.

I found out weeks ago that you truly were ok that June. You went Home on June 20, 2013. I think I already knew, but the reality came crashing in then. I am still at peace, but the sadness rose because I never got to say goodbye.

We met when I was 23, you were that co-worker that everyone liked. As a teacher, you were the most popular teacher. It wasn’t because you were weak or too easy, but because you were good. You almost never had any discipline problems in your classroom despite the type of school where we taught. You taught well and made learning fun. I learned a lot from you as I entered the classroom for the first time.

It took a few months, but a friendship developed. I remember when your mother died. I went to the funeral home to let you know that I cared. You seemed so lost, but you managed a smile. Time went on, and we became inseparable. Neither of us noticed it until some of our other co-workers and friends started calling us the “twins”. We laughed because we argued sometimes as much as we joked. You loved to tell me how to dress and put on my makeup because I never got it right. I would get annoyed at first, but you kept on. You were always giving me advice. We could talk for hours about nothing, but it could seem like profound lessons would always be found in our talks. It really did seem like you became the big sister I probably needed. You made me laugh, encouraged me when I was unsure, and gave me a good swift kick when I needed it.

I remember your wedding and how you loved magnolia blossoms. I remember the day you bought your house and how you loved to decorate the yard and inside in country sweetness and for every holiday. I remember all the friends we met at the yard sales we had twice a year and how many looked specifically to come to get your clothes. You sure liked to buy clothes. You had so many that a few times you had some in the yard sales with the tags still on. You loved helping those women pick out just the right outfit for them. We all got laughs as you would make sure their men let them take home as many as the women wanted. That was definitely your element.

Two moments, though, rise to the top as being the greatest gifts you ever could have given me. One was when you told everyone I was your sister because you wanted me to stay with you in ICU, and you felt safe enough to tell me you were afraid. Holding your hand, so you could sleep was my pleasure. The other moment was when you called to tell me that you had accepted Christ as your Savior. I had quietly prayed for that for several years after we met. I never judged you because I had been lost and searching as you had been until I let Jesus change me, too. I knew what you needed most, but I knew preaching to you, especially from me, wouldn’t help. I just decided to be your friend as best I could and pray that God would show you the way. He did, but when you thanked me for being the example that showed you God’s light and made you want  what I had, my heart burst. I said, “I always wanted to tell you straight out, but I wasn’t sure how.” You told me, “No, you did it the right way. I would never have listened to you, my kid sister. Your actions led me to search for the right person to ask what it was you had.” As time and disease took its toll, I was more and more thankful that I knew we would be friends forever, and I would never really lose you.

That assurance of knowing you are in Heaven now is why this isn’t really goodbye, Mary Alice. I wish I had been there physically when you left this plane, but I do think I was there spiritually in the way we always seemed to know when we needed each other. I hope you felt my prayers. Now, I honor you friendship, and tell you thank you for being just what I needed all those years. You truly were my best friend and my sister. Happy Birthday. I will see you again, and we will sit together as always. I might even let you fuss at me and tell me the way I should have done things. I love you, Girlfriend!

DeafBlindness and Grief: Missing Out on Saying Goodbye

April 14, 2016 by Renee K Walker 5 Comments

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.

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  • How can I Self-Advocate?
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  • DeafBlindness and Grief: Missing Out on Saying Goodbye
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  • Renee K Walker on Second Match Made in Heaven
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