Outcomes: Anticipated And Unanticipated

by Jeannie Taylor

Butterfly

It has been said something as small as the flutter of a butterfly’s wing can ultimately cause a typhoon halfway around the world. – Chaos Theory

In our lives, we are constantly being called upon to make decisions.  Ideally, some decisions can be made well in advance allowing time for investigation and consideration before making up one’s mind.   However, some decisions are spur of the moment and require to be made with little or no deliberation or preparation.  Regardless of whether they are planned or unplanned, our decisions have outcomes.

In 1961, Edward Lorenz, assistant professor at Massachusetts Institute of Technology’s department of meteorology, created an early computer program to simulate weather.   In the article, The Meaning of the Butterfly, by Peter Dizikes (June 8, 2008, Boston Globe Media), Lorenz changed one of a dozen numbers representing atmospheric conditions, from .506127 to .506. That tiny alteration utterly transformed his long-term forecast, a point Lorenz amplified in his 1972 paper, “Predictability: Does the Flap of a Butterfly’s Wings in Brazil Set off a Tornado in Texas?”  The “innumerable” interconnections of nature, Lorenz noted, mean a butterfly’s flap could cause a tornado – or, for all we know, could prevent one. Similarly, should we make even a tiny alteration to nature, “we shall never know what would have happened if we had not disturbed it,” since subsequent changes are too complex and entangled to restore a previous state.

As a result of Lorenz’s work, the catch phrase ‘The Butterfly Effect’ was coined.  In general, people have come to associate the phrase with the idea that regardless of how small or seemingly insignificant our actions are they have the potential to yield a wide range of outcomes.  A single word, decision, or act can change the course of our lives, the lives of others, or even our world, forever.

Those of us with hearing loss can leverage what we do and say to bring about beneficial and desirable outcomes for our community despite the communication challenges we face.  Your actions and mine have value.  When we interact with others genuinely and remain open to the needs of those around us whether hearing, deaf, hard of hearing, or deaf-blind, the potential for optimistic and constructive change is enormous!

For your consideration:

  • Regardless of where you live or how many people you come into contact with on a daily basis, do you think the power of your words, gestures, and actions, toward others have the potential to bring about outcomes (anticipated or unanticipated) that will alter the world?
  • How can we increase the possibility of beneficial outcomes rather than harmful ones when it comes to making decisions about our own hearing loss?
  • Mahatma Gandhi wrote, “Be the change you wish to see in the world.” As a person with hearing loss, how does this quote apply to you?
  • My challenge to you: Experiment with ‘The Butterfly Effect’.  Choose a time when you are interacting with someone.  Then say or do something intentionally that has the potential to set off a wave of positive, optimistic energy in the life of that person.  The impact could be the start of something great!   Watch for results, and share them with us soon!

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“Be A Good Listener. Your Ears Will Never Get You In Trouble.”

by Jeannie Taylor

Why do you think this quote by Frank Tyger caught my attention?  Well, for me, simply because it’s not a truthful statement!  You could search the Bluegrass high and low and never discover a more attentive listener than myself.  I possess some of the best listening skills of anyone my age!  I have all the right stuff…see! 

Girl

At this point you may be asking yourself, “If you’re such an awesome listener, then how do your ears get you in trouble?”  Let me explain with an example or two!  My parents thought Elvis Presley was the rave, the King of Rock and Roll, a real icon.  My siblings and I were forced (well, maybe not forced) to listen to Elvis – often.  I think my parents owned every album the man recorded.  It never failed that most evenings my mom or dad would go to the dining room where set our big, solid wood, stereo console (straight out of the 70s and now would be considered mid-century vintage) and would ruffle through album covers until they found (yes, you guessed it) their favorite Elvis album.  Believe it or not, there’s research out there that suggests children liked the music their parents listened to; however, I beg to differ!  I do remember one song that I would sing along with Elvis because the words in the chorus were repeated often.  To my hard of hearing ears, Elvis would repeat this chorus line over and over again by singing the words “return to Simba”.  At the time, I didn’t know if Simba was a person or a place.   I just knew I enjoyed repeating the chorus.  It wasn’t until I was an adult that I learned Simba never existed (except as a character in The Lion King during the early 90s).  Discovering the correct words to the song came full circle (which was also an event in Simba’s life in The Lion King) and gave new meaning to my world!  I hope no one took offence to the slight change of lyrics I made in Elvis’s hit song “Return to Sender”!  I suppose many people listening to me (sometimes I would catch myself singing it in front of other people) would laugh or maybe smile and think, what an unusual, creative child to have written new lyrics to “The King’s” songs!

The morale of this story is, if you are a person with hearing loss such as me, then you must learn to laugh at yourself from time to time, daily look for humor in your life, and enjoy the ride!

What do you think?

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The Danger Of Disparity

woman

by Jeannie Taylor

Language barriers are not uncommon in our present time.  It is true, now more than ever, that America is indeed a melting pot.  We are a society of multiple cultures and races attempting to blend together as one nation.

Perhaps no one understands the challenge of language barriers better than the Deaf and hard of hearing community.  Often we read stories or watch news broadcasts which highlight major errors in understanding and interaction due to a lack of use of professional interpreters for the Deaf or assistive listening devices and other accommodations for the hard of hearing.  According to the National Association of the Deaf (NAD), “Deaf and hard of hearing people deserve to have interpreters who know what they are doing and who do it well.  A qualified interpreter is one who can, both receptively and expressively, interpret accurately, effectively, and impartially, using any necessary specialized vocabulary.”  Perhaps even a greater tragedy is when family members and friends serve as interpreters in lieu of professional interpreters.  In a medical setting, the danger of that practice puts the Deaf or hard of hearing person’s safety and health on the line.  Consider the omissions, substitutions, and addition of information that are possible when using nonprofessional interpreters!  This increases the risk of medication errors, wrong procedures, and perhaps even puts the person’s life in danger.  In the article, “Hospitals Often Ignore Policies on Using Qualified Medical Interpreters”, from the magazine Modern Healthcare (August 2014), Sabriya Rice reported that hospitals often ignore policies on using qualified medical interpreters due to time pressures, lack of knowledge about the availability of professional interpreters, or procedural difficulties in arranging for interpreters.

The Deaf and hard of hearing community should stress that their communication needs be addressed by high standards and best practices regardless of the professional environment in which they find themselves.  According to the Americans with Disabilities Act, there is an obligation to make provision for those with communication disabilities.  Kentucky’s Protection and Advocacy (P & A) agency located in Frankfort, Kentucky, was designated by the Governor to protect and promote the rights of Kentuckians with disabilities through legally based individual and systemic advocacy and education.  Kentucky’s P & A may be contacted using the information below:

Phone:  502-564-2967 or 800-372-2988 or by writing to

Kentucky P & A, 100 Fair Oaks Lane, Frankfort, KY  40601

Disparity usually refers to a difference that is unfair.  According to the Kaiser Family Foundation, a non-profit organization focusing on national health issues, “health care disparity typically refers to differences between groups in health coverage, access to care, and quality of care. While disparities are commonly viewed through the lens of race and ethnicity, they occur across many dimensions, including socioeconomic status, age, location, gender, disability status, and sexual orientation.”

For your consideration:

Based on the given definition of disparity and health care disparity, are you aware of disparities that exist for the Deaf or hard of hearing?

Do the Deaf and hard of hearing communities face increased barriers to accessing care?  If so, do they receive a poorer quality of care as a result?

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A Question Of Interpretation

People Talking

by Ed Schickel

The National Association of the Deaf (NAD) recently sent out an e-blast which contained an announcement about a lawsuit that was pending against a hospital.  NAD’s article said the deaf family of a dying cancer patient was not given an interpreter as required by the ADA.  The patient herself had to interpret doctors and nurses for the family.

We have to understand that any lawsuit only gives one side of a story.  So, we have to be very careful how we interpret the situation.  We are not on the jury and will probably never get the full story.

That being said, it is inappropriate and unacceptable for a patient, or family member to have to interpret medical information.  A number of years ago, a story said that a 10 year old son, who was interpreting for the parent, had to tell the parent that she had terminal cancer.  Again, we don’t know the full truth of the situation.  Nevertheless that is inappropriate and unacceptable.  That is why the ADA took on the situation and said that doctors and hospitals are responsible for providing interpreters for deaf patients and families.  This is equal access.  Hospitals in general are trying to comply.  At the same time, doctors and hospitals should have available Assistive Listening Devices (ALDs) for Hard of Hearing patients and their families.  Shouting at patients to get them to hear and understand is not appropriate.

My brother was in nursing care.  While visiting him one day, I could hear the man in the next bed crying.  In fact, he was bawling and could not be ignored.  I started to talk to him and calmed him.  I asked what the matter was.  He said his doctor was mad at him.  I asked why the doctor was upset.  He didn’t know but the doctor was always yelling at him.

In the process of trying to speak loudly, our facial expressions change.  We may appear angry when all we are trying to do was to make ourselves understood.

I had a cheap ALD in my car that a vendor had given me.  I gave it to the man.  The next time I visited he was all smiles.  The doctor wasn’t mad at him at all.  The nurses who came in the night and didn’t turn on the lights were not trying to hurt him when they attempted to turn him.  He could understand them and assist rather than fight out of fear.  Most of all, he could understand his family.  The man died a week later.  But, he was able to understand and people weren’t mad at him.

Incidents like these that have been cited are important examples about the need for compliance with the spirit of the ADA and the needs of the patients and family.  Hospitals, doctors, nursing homes, et.al. need to provide appropriately certified interpreters and assistive devices.

That being said, we need to look at the other side of the page.  A doctor is notified that a patient is coming in who is deaf.  The staff arrange for an interpreter. The insurance will pay the doctor $X for the visit but does not pay for the interpreter.  The interpreter is paid $25 to $50 per hour plus mileage and travel time. This can be 2 to 4 times what the doctor is paid for his/her service.  Basically, s/he is seeing the patient pro bono.  How many patients can be seen, lose the cost of the interpreter and stay in business?  Worse, what happens if the patient doesn’t show?  The interpreter has to be paid.

Hospitals are in a similar fix.  Providing an interpreter for 24 hrs. per day is often a greater cost than their insurance reimbursement.  In addition, the availability of interpreters is limited especially in rural communities.  Video interpretation is an option but is not the option of choice.  It, too, is expensive. Training staff in the use of and keeping assistive devices available on each floor and nurses station is also an issue for hard of hearing patients.

There are no easy answers.  There is no real fairness about this issue.  There is only what is appropriate and ethical.

What is your opinion?  What is your experience?  Please share your thoughts…

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A Yearning To Communicate: Language Barriers Mirror Hearing Loss

Welcome

by Judy Vinegar

War is outside of my experience. And yet, like many others in the world, I am riveted and flooded with a feeling of fellowship as I watch the millions of people from the Middle East brave their epic journey to safety in Europe. Yet, once they set foot on these longed-for European shores, many are uncertain what country they are actually in much less knowing which country (if any) will accept them. Once accepted, the grueling challenge of competing for education and jobs while struggling with communication issues rears its ugly head. Their journey to safety has only just begun.

According to a Voice of America news article, most refugees speak Arabic or Pashto –  languages that are not common in Europe. As a result, refugees are not able to communicate with the European locals. These migrant scenes strike a bell of recognition in all people who struggle daily with hearing loss:

  • At a park in Belgrade, many refugees cannot understand that an aid distribution center nearby is overflowing with supplies.
  • At a border crossing in Roske, migrants are struggling to figure out whether they will be able to go to Germany if they register here.
  • At a train station in Budapest, refugees are spending hundreds of Euros to buy tickets to Germany when they do not need to do that.

Many people with hearing loss can identify with the refugees’ confusion. Decades ago, I flew home to Cincinnati and unknowingly stepped out of the plane into an airport in Pittsburgh. Apparently the pilot had explained en-route that the plane was rerouting due to weather problems, but I did not hear or understand the message.

People with hearing loss often talk of the tension, anxiety and at times, downright fear that is experienced when they are unable to hear and understand what is going on. Words missed or misinterpreted can sometimes change your life. It can be high risk not knowing what is being said and there is no doubt that the refugees are feeling this as they struggle to understand.

Using the Cell Phone as a Personal Translator 

The absolute necessity to communicate is taking center stage during this epic migration crisis. Besides relying heavily on their cell phones to navigate border crossings and as pathfinders to the west, refugees are using apps like Google Translate to help them understand aid workers. With Middle Eastern migrants flocking to Germany, demand for Google’s Arabic-German translation service has surged five-fold. The Google Translation app works like Siri – it translates what you say into another language. (The translation app is not yet totally accurate, but improvements are continuing to refine it). With the Google Translation Word Lens feature, refugees can point the iPhone camera at a sign and watch it translate in front of their eyes.

Communication is so important that there is a race to find a new signal, a new local SIM card or a public wi-fi network. Migrants’ phones (sometimes tethered to a battery pack) are often the only item they carry. Power and wi-fi are in such demand that Greenpeace Hungary set up an even larger tent to provide both. The area is packed with people from the moment it opens to closing time. Some refugees say that the need to communicate can seem as dire as the need for the basic supplies of food and water.

Using the cell phone as a captioning device for people with hearing loss

The need to communicate is just as crucial for people with hearing loss. Smart phone conversations and face to face conversations can be captioned. Check out the following websites for phone compatibility and details:

  • Hamilton Captel and Clear Captions: You can listen to your Smart phone conversations while reading word-for-word captions of what’s being said.
  • Live Caption, Closed Capp, and Dragon Dictation: Need help understanding your waiter at your favorite restaurant? When you download these apps, the waiter can speak directly into your phone and live captions appear on your Smart phone screen. You can also use the app to talk to people who are deaf or have a severe hearing loss. Speak into your phone and your words are transcribed onto your phone screen for your conversation partner to read. Although these apps are not perfect, they will usually give enough information to improve understanding of the conversation.
  • Transcense: This app is currently in development and will transcribe conversations with multiple participants in real time. Group conversations such as business meetings and family dinners are especially difficult for deaf and hard of hearing people. The Transcense app, when installed on several mobile devices, essentially turns them into a distrubuted microphone system. It transcribes multiple voices simultaneously and assigns each speaker a different color bubble in a single scrolling readout. Estimated cost: $360 per year.

Although communication technology is not yet perfect, it is accomplishing what was thought to be impossible just 5 or 10 years ago. Besides the few captioning possibilities that are listed here, there are many other ways that the Smart phone can help people with hearing loss.

The yearning and struggle to communicate, the absolute necessity to communicate, is evident everywhere as people grasp on to these life saving technologies. Obtaining and ensuring communication access is a different kind of war.

What do you think?

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Choosing Civility…

Gerry Gordon Brown Photo

by Gerry Gordon-Brown (based on Dr. Forni’s Book of the same title)

Dr. Forni’s book ‘Choosing Civility’ is about how we should treat each other.  All people deserve respect except when extreme rudeness is being demonstrated. First let us define civility.  Civility is defined as a code of conduct based on the “3Rs”- Respect, Restraint and Responsibility for our personal behavior throughout our participation in activities of daily living.  Civility is about showing kindness, consideration, sensitivity, caring, giving and nurturing.

The majority of people would agree that thoughtful behavior, common decency and random acts of kindness are in short supply in our nation today.  Showing kindness and good manners have been put on the back burner or simply forgotten in our hurry up world of emails, mobile phones, texting, and multi-tasking projects.  In our society we have forgotten how to treat each other or how to be kind to each other.  When we watch or listen to our local and/or national news, what you read or hear for the most part is negative news…someone or a group of people hurting someone or a group of people hurting more than one.   We are living in very dangerous times.  A higher level of civility is needed in our activities of daily living, starting at home and then transferring into our communities and then to our nation.

We as members of a civilized society need to demonstrate many more random acts of kindness.  People deserve respect for the most part, but sometimes it is very difficult to show respect because of the way we are treated.  In his book Choosing Civility, Dr. Forni identifies twenty-five rules that are most essential in connecting effectively and being happy with ourselves and others.  He covers topics that include the following:

  • Think Twice Before Asking Favors
  • Give Constructive Criticism
  • Refrain from Idle Complaints
  • Respect Others’ Opinions
  • Don’t Shift Responsibility and Blame
  • Care for your Guests
  • Accept and Give Praise

We are way overdue to a return to a high level of civility in our society.  It is much easier to be respectful and kind than to be mean, rude, and having a negative attitude.  We seldom read or hear about acts of kindness. Our acts of kindness are few and far apart in some cases, given the major highlights of our local and national news reports.  There is a saying by one of our local organizations that says ”Attitudes are the Real Disability”.  It is true, if we have a kind attitude and show respect for people, we feel better – we like ourselves, and we help make this a better world and more civilized society.  Good manners never go out of style; it’s the same from one generation to another.  Being polite and saying ‘please’ and ‘thank you’ demonstrates good manners towards each other.  A friend once stated that rudeness seems to be an acceptable norm in many situations.  We are failing the respect and consideration test.  There is a need to constantly practice good manners until good manners become a habit.   There are some behaviors that are influenced by our sense of what is proper, responsible and a decent act to do.

Finally, I truly believe that this is a book for every member of our community and our nation.  Dr. Forni provides examples of how to put each rule into practice and so it makes life for each of us and the lives of others more enjoyable, happy and rewarding.

Choosing Civility is a book that is very easy to read and it is a practical handbook on the lost art of civility and compassion!

Finally, remember these words of wisdom…

“Treat people as if they were what they ought to be and you help them to become what they are capable of being. “  Wolfgang

“Individually we’re smart, but Together we’re brilliant” unknown

Submitted by Gerry Gordon-Brown, Peer Mentor for the Hard of Hearing, Deaf & Deaf/Blind Gallaudet University, Washington, D.C. Class of 2014 for Peer Mentoring

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Advocating For Your Needs

Do What You Love

by Jeannie Taylor

According to Your Dictionary, the definition of advocacy is the act of speaking on the behalf of or in support of another person, place, or thing.  My first memory of the use of the word advocacy occurred as I was growing up in the 1960s and 1970s in association with the civil rights movement. During that time in history, advocacy was used to leverage social change in communities and political change in laws that would ensure individuals’ freedom to participate in society without subjugation.   As time would have it, however, the word became associated with people seeking protection from discrimination on grounds of disability.

Although there are several forms of advocacy, self-advocacy has come to be considered the civil rights movement of those with disabilities according to many councils and organizations who are defenders and supporters of disabled people.  Advocacy skills can certainly be learned informally by groups or individuals through experience or by observation as well as through special training.   In the article, “Self-Advocacy:  Know Yourself, Know What You Need, Know How to Get It”, Nancy Suzanne James states, “The self-advocacy movement seeks to reduce the isolation of people with disabilities and give them the tools and experience to take greater control over their own lives.” James suggests that self-education plays a key role in the success of a self-advocating person.

As it pertains to hearing loss, I would like us to look more closely at the three parts to becoming an effective self-advocate that James writes about.  First, be sure to know your hearing loss. With the help of your audiologist or hearing instrument specialist, become knowledgeable about your hearing loss because hearing loss is individual and unique to each person.  Ask questions such as:  What is the degree and pattern of my loss?  Does my hearing loss only affect high tones, low tones, or both?  Is my hearing loss bilateral (both ears) or unilateral (one ear)?  Is my loss symmetrical (the degree and configuration is the same in each ear) or asymmetrical (the degree and configuration is different in each ear)?  Self-education is an on-going process especially in the area of hearing loss because individual needs can change over time.  Other questions you might ask are:  Is my loss progressive (gets worse over time)?  Is it fluctuating (sometimes getting worse, sometimes getting better)?

Secondly, I feel it is important for you to know what you need.  In order for you to function daily in a positive and successful manner as a person with hearing loss, ask yourself what interventions, accommodations, or modifications are necessary?  What barriers need to be leveled so that you can participate to the extent you desire in all areas of your life?  Let me explain what these terms mean. ‘Interventions’ are carefully planned processes with clear steps, goals, and guidelines by coworkers, family, friends, doctors, and other professionals to help the person with hearing loss.  ‘Accommodations’ include making adjustments or adaptations to circumstances or environments by providing different ways of support for the person with hearing loss to be successful.  Examples of accommodations might include an FM System, TV captioned, special lighting, sign language, and reduced auditory and visual distractions, etc. The accommodations or changes do not alter or lower the expectations for the person with hearing loss; however, they help to ensure the person with hearing loss has access to effective communication.  ‘Modification’ may create a different standard or represent changes in expectations.  For example, in a work setting, performance criteria may be different for a person with hearing loss verses a person without hearing loss.

Finally, I feel it is important for you to know how to get what you need.  The Americans with Disability Act of 1990 prohibits discrimination against people with disabilities in employment, transportation, public accommodation, communications, and governmental activities. The ADA also establishes requirements for telecommunications relay services.  ADA is an Act to establish a clear and comprehensive prohibition of discrimination on the basis of disability.  Although people with disabilities have rights, it is important to exercise those rights in positive ways.  Remember to work toward solutions in an assertive, respectful and polite ways!

I urge individuals, regardless of their level of hearing loss, to take an active interest in learning skills of advocacy that will lead to improved and enhanced communication for themselves or others.  Regardless of their role in the communication cycle, communication is successful only when both the sender and receiver understand the same information.  According to author John Powell, “Communication works for those who work at it.”

For your consideration:

  1. Do you feel you perform better when you are advocating for yourself or others? Why?
  2. What challenges have self-advocacy helped you overcome?
  3. How well do you feel you advocate under pressure?
  4. As a person with hearing loss, how would you rate yourself as an advocate for your needs? 

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