Monday 22 July 2013

So you're deaf, get over it!


Me and two Moroccan shop keepers in Fez, Morrocco  

"I am only one, but still I am one.
I cannot do everything, but still I can do something;
And because I cannot do everything
I will not refuse to do the something that I can do"
- Helen Keller


By Jacqui Ball
     Welcome to the Fractured Ekoze website.  Being  deaf does not mean you can't reach for your dreams.  The main purpose of writing  this blog is to…
  • Inspire and inform you of my experiences relating to my hearing-loss and,
  • To encourage you to apply these strategies when you feel challenged
     But first, let me introduce myself. My name is Jacqui Ball, I am a woman in my late 60's and for most of my life I have had bilateral moderate - severe hearing impairment from birth, 75% in my left ear and 65% in my right.  Although I have been encouraged to wear two hearing aids, I wear one digital hearing aide in my right ear, which is my best ear.  I have been inspired to write for years to reach out to people who have hearing loss and are seeking solutions in managing their disability more effectively within the community.  In the past, I have met so many people, who find it difficult to come to terms with their hearing loss particularly those who are young or diagnosed late in life. 
The Siemens hearing aid I wear
     I have also found that a small minority of the deaf community,  who have hearing-impairment, are either afraid or embarrassed of the fact that they have a hearing loss. They refuse to accept their disability or wear their hearing aids. I want to set a good example by sharing with you how I managed to survive my whole life of being hearing impaired defeating challenges that I have been confronted with from my childhood until now.  

     My goal is to support people who have experienced similar issues and are finding it difficult to accept their hearing loss in a world of sounds and voices.  As a result of achieving the positive outcomes in my life, this website is also an open forum for people for both young and old, to say what they want and find answers to help them cope with everyday complex challenges and personal issues relating to their disability.  This blog site also aims to help the hearing impaired community by sharing and exchanging valuable information and stories that will reassure others who also have the same disability, that we are not alone. 







About Me

A handsome fellow volunteering to have a photo 
taken with me in Tuscany, Italy
"Watch me when people say deaf and dumb, or deaf mute, and I give them a look like you might get if you called Denzel Washington the wrong name."

 
Writer: Jacqui Ball

     I have experienced difficult challenges that have confronted me for most of my life, but thankfully I have managed to overcome these challenges with resilience, commitment and determination.  I was able to do this by developing and utilising learnt skills and specific tools in resolving complex issues that all of us are facing every day. 

      As some of you may be aware, being born with hearing loss or acquiring it over time and having to cope with challenges every day, can often be a stressful and frightening experience. This can depend on whether or not you come from a supportive and secure background and who you are as a person.  In my case, humour was and still is a way of how I have coped with my disability and in overcoming any idiosyncrasies that have been associated with my behaviour as a hearing impaired person. 


I.  Childhood


   ve         I never considered my disability a problem when I was a child.  I was always laughing and happy with other children, whether I was at home or at school.  It was evident I had a speech impediment with a slight lisp and was more or less, forced to wear the old fashion metal transistor hearing aid with the cord, placed in a little pouch, which made it quite visible to those around me, particularly in primary school.  Despite the fact that I was naive and young, I never hid behind my disability or felt insecure because I did not think there was ever a need to do so.   The reason being, was perhaps I never heard what people or children were saying, unless they physically signalled me to pay attention, I would always visually focus on things that would make me smile, so in a way, it was a godsend to have this disability. 

      In the 60's era during my childhood, I was unaware of the warning signs that children with disabilities would experience.  Quite often children or adults would say cruel comments or ostracize someone who had a disability.  But looking back in hindsight, I managed to not take too much notice and would find myself always engaging with other children, as though my disability was invisible.  I believe that my disability was more of a problem to the adults that I associated with, particularly teachers.  In those days, society were never educated about managing a disability such as mine, even my parents saw my disability as an imperfection and were perhaps suffering guilt or were in denial, when confronted with the truth that I had a hearing impairment.

II.  School days

      As I was growing up and transitioned to different class grades, I found that some teachers at school were more prone to stigmatised a child with a disability, unintentionally of course, but as they were in a role of authority, I assumed that they felt that their approach was the correct way of treating me.  Teachers would always allocate me in front of the class with another child, who was categorised or labelled as having an intellectual disability, were 'special'/simple' or had a learning deficit.  At the time, they may have thought it was beneficial for my own good, so it was a wonder I developed a mild inferiority complex while growing up, and to some degree, it did stunt my learning ability as I was often distracted.  These days, this is recognised as Auditory Processing Disorder. I talked more than I listened, therefore I was missing out on the necessary vocabulary or language which was essential in a child's development and learning process.  Sometimes, I felt like I was different from the other children but not knowing why.

       My parents did their best to ensure that I would be able to be educated enough to go to a 'normal' school, so I could participate in school activities, learn subjects to improve my grades, and develop social skills by engaging with “normal hearing” children.  They would also send me to elocution classes with a speech therapist, where I learnt to pronounce my words more accurately, as well as learning the skill to read lips.  Attending these classes somehow improved how I communicated with people.  It increased my self esteem with the hope that I would be accepted as a bright and positive individual. 



III.  Teenage years

     However, during my teenage years, as I was developing into a young woman, the thought of wearing a hearing aid was far from my mind, in fact I never wore my hearing aid, as I often felt like I did not fit in with my peers.  I became quite rebellious due to my unstable family background and I often felt like an 'outcast' when associating with the 'normal' hearing social group.  I admit that I chose to be in a world of my own, and my behaviour became quite difficult to manage.  I spent a lot of lonely times, isolated in my room writing poetry, expressing my anguish and hurt on paper.  Yet I never really understood my reasons for feeling so withdrawn from society.

IV.  Early Adult Years

      As I matured into an adult, I worked in several jobs involving retail or hospitality.  It was not until I secured a casual position, I realised that, if I was at risk, being dismissed because I could not follow or comprehend what was required of me as an employee, it was necessary that I wear a hearing aid.  I became an expert at observing and interpreting motion into what I thought was meant to be said.  Taking a second guess what the clients ordered for their meal or what service they required, was something I became an expert in and thankfully I somehow always managed  to cover myself. In hospitality, I was writing meal orders by numbers and in some cases not delivering what was being requested by customers or misconstrued a direction given to me by my employers.  I could not continue with the pressure of embarrassing myself or failing to deliver the customer service that was expected of me.


V.  Working years

       Searching for the right employment was a long process and challenging, I decided at seventeen, that nursing was the career I really wanted to pursue. Unfortunately, being deaf, was not accepted in those days, so I turned to other employment. I was lucky to have the opportunity with different employers, who were neighbours or friends of my parents.  My first real job started at 14 years of age while I was at school was in a health clinic.  Then I was offered a position as a nursery attendant in a children's nursery.  Other opportunities included being a hair salon apprentice, a kiosk assistant at the Adelaide zoo, an assistant for a private haberdashery company, a stock controller for L'oreal of Paris, fashion sales person in Melbourne and Adelaide, and a retail assistant in both Myers and David Jones in Adelaide and Sydney.  Although I was privileged enough to be given these positions, which increased my confidence and improve my self esteem, I never felt completely satisfied about taking advantage of people.  I recognised that I possessed feelings of compassion and wanted to help other people who were in need. The discrimination laws had finally been introduced,  and I applied, without informing the institution, that I was deaf, and managed to be accepted and study to become a general/mental health enrolled nurse at the age of 27.

      Although the Discrimination laws were now in place in being employed in the early 80's, I still felt it would be held against me.  I had to prove to myself, that I had the intelligence and determination, to succeed in the career, that I knew I loved.

      Now years later, as a result of achieving the positive outcomes in my life, I have acquired excellent communication and observational skills, and often engage with hearing impaired people from all walks of life within my work environment.  They will often deny that they have hearing difficulties, refuse to wear hearing aids that have been prescribed to them by their audiologist, or isolate themselves so they do not have to participate or engage with others. I totally understand why they feel this way, but realised that by owning your disability and confronting the challenges that you are faced with, you will find it will decrease the levels of anxiety we suffer, and life will be made easier in the long term.

     I keep myself busy by traveling, writing, caring for animals and involve myself in creative art.  As you read this blog you will come across some of my work that I do on Polyvore, a website for amateur artists. The idea behind my art is creating a collage out of original pieces of photography or pictures. I am also a group facilitator for a therapeutic model called Collaborative Therapy in a government mental health facility which involves educating people with mental health issues preventative interventions/strategies which can assist in keeping them at home and in the community rather being treated in hospital. 
     

Own Your Disability

My friend Catherine and I sitting in a little cafe in Vatican City, Italy
"When I was young I knew I was deaf. I couldn't accept it."

Marlee Matlin

Writer:  Jacqui Ball   
     As I previously mentioned, people often have the tendency of not acknowledging or accepting their hearing loss, whether it be inherited, congenital, acquired or an unknown diagnosis.  Being faced with different challenges can often have a profound detrimental effect on our personal development, how we see ourselves and how we communicate in the hearing world. 
     
      It is important that once you have discovered that you no longer have the ability to clearly hear sounds or fully comprehend what has been said to you, it is up to you to own your disability and let people know that you have a hearing impairment.  As a hearing impaired person, I too have been faced with many challenges throughout my life. I have documented a few of these challenges, and I hope that as you read through my blog, that you can resonate with what is being said and accept your disability to enjoy your life more fully.

Social Challenges

     Socializing as a hearing impaired person can be one of the most difficult challenges to be up against.  I remember when I was quite young, I had difficulty in understanding what the other children around me were saying, so I would keep myself occupied by actively being involved with an activity that did not require listening. When I reflect back to my past, I was quite an attention seeker, too busy entertaining other children by performing acts that I would see only TV and try a parody of characters that made them laugh. 

     The entertainment gene came from my mother who would sing on stage or a television show, although she was not the most confident person on stage, I still remember it was an exciting time for me to watch her as a child.  My behaviour in classroom was not always acceptable by the teachers, I would either be distracted talking to others in a rather loud tone ( I obviously could not hear my own voice) or humour my way to gain some attention, and would often found myself heading to the Principles office. 

     Growing up as a teenager was a little more difficult, as I was quite stubborn when it came to disclosing my disability to anyone, in fact to some degree, I developed an slight inferiority complex so you could say that I was in denial.  The desire to be accepted as a 'normal' teenager was never the real problem. but my inability to concentrate at length in class or focus on my studies would lead me to all kinds of strife.  I was never without a friend, and would rather be socializing with other teenagers than be committed to achieving high grades at school.  It was much easier for me as I did not have to sit and listen for hours or participate in discussing the subject in front of the class room.  

      I would always associate with people who made me feel uplifted or accepted me for who I was, despite the troubles that I had back at home.  In group conversations, I would guess hypothetically, what topic they were discussing, I would strain to pick up keywords that I would hear and try to engage with the hope of not responding inappropriately, which wasn't always the case.  To be honest I continue to do this even now as an adult.  I realized that I felt more comfortable engaging in a conversation with no more than two people without background noise.  On many occasions, if  I was attending a party with friends, I often found myself being silent while everyone was so busy talking to other hearing people, or I would walk away from the group and sit in a corner alone.  Unfortunately, being anti social is very common for hearing impaired people, when they are unable to engage normally in a social group.
     
Two friends of mine and myself in Istanbul, Turkey
     I have also noticed that people with a hearing impairment can be 'labelled' as intellectually impaired, retarded, incompetent  slow or stupid by people in general which can be an insult to our intelligence.  If you read 'Seeing Voices' by neurologist Oliver Sacs (1989, publisher University of California Press), he explains that most individuals with a hearing impairment gain knowledge through observation, absorb information that is relayed to them, whether it be written on paper or by lip reading, and even if they have not picked up the full content of the conversation, they store the information away in their brain, then try to rationalize what has been said to them by incorporating the content to a more comprehensive form.  This is very much how Auditory Process Disorder is now more of a diagnoses rather than being labelled as intellectually impaired. To simplify this theory further, it means that people with hearing impairment take longer than the average hearing person to work out what is being conveyed to them, so our response to what we hear is prolonged. This is why people often perceive hearing impaired people as slow or intellectually impaired which is not the case.

Employment Challenges

     Being in a work environment where you are employed, can present various problems for hearing impaired people.  I believe it is wise to be honest if you are applying for a new job. I often tell my employers that I am hearing impaired, so once they accept me into their organisation, they legally cannot dismiss you on the basis that you have a disability where you cannot hear.

     Many years ago, when I was employed as a nurse assistant, an incident occurred at work, where I was accused of not hearing a bell that a resident had pressed, and was sacked on the spot.  I was in such shock, that I decided to fight for my rights and contacted an anonymous work union who negotiated with my employer to reinstate me.  I was put on 3 months probation.  I never told my employer that I was hearing impaired at the time of my interview, but it would have been less stressful if I had of disclosed my disability in the first place. 

      In all honesty, these days you do not have to say anything about your disability in an interview, due to the discrimination laws of today.  You must, however, consider that if you experience a high risk situation in your workplace, and if your ole makes you  accountable, you could end up losing your position.  For example: if the fire alarm rings, and you don't act or evacuate the premises according to the organisation's policy, the possibility that your employer could dismiss you and it is their right to do so.  If they are unaware that you have a disability and you never disclosed to them in the first place,  you will become your own worst enemy.
     
     If you are accepted for your employment position, there may be some tasks that make it difficult for you to manage, for example;
  •  answering or talking on the phone unless your employment has supplied you a TTY   or the latest model phone 
  • sitting in on meetings
  •  responding to fire alarms or bells 
  • engaging with clients from cultural backgrounds or with physical disabilities (eg cerebral palsy, stroke etc) 
     If you do decide to disclose to your employer that you are hearing impaired, then there is an obligation for them to accommodate you in your role.
    
     The most significant challenges that hearing impaired people often experience within the workplace, is bullying, harassment and discrimination from particular work colleagues.  I have experience all three challenges but only as an adult.  Sometimes the impact of how people treat you at work and not recognizing early warning signs of any of these detrimental challenges, can have a horrendous effect on hearing impaired people or anyone with a disability.  Being aware of  your rights is vital in the workforce.  It is up to you to disclose what your limitations are as well remind your colleagues of the workplace Bullying, Harassment and Discrimination policies, you will become more resilient and will be able to enjoy your role more.



Home Environment

The fear of the unknown, not being able to associate with groups, hearing particular sounds or being able to determine where the sounds are coming from, are some examples where you depend more on your observational senses.  Living in a secure and safe home environment is really important for people with a hearing loss.  If living alone means that some things we can be deprived of  such as not being able to detect the phone ringing, the fire alarm setting off, a knock at your door, hearing the TV or music on the radio, can make our life rather frustrating, almost to the point where it leads to anxiety and depression. 

     Also the possibility of a person breaking into your house while you are sleeping can be a traumatic experience particularly if you have woken up to find that your bathroom window has been broken into and most of you valuables have gone missing.  It takes some time to overcome an experience such as this, as you lose the ability to feel safe living by yourself.  A lot of hearing impaired people are  unaware of accessible tools and resources which can be used to prevent incidents like these occurring.  Upgraded and creative technology has developed some amazing devices to assist hearing impaired people living independently to live and feel more secure in their own homes without fear.

   The ability to enjoy everyday leisure's while at home has also been improved so that you can watch TV using captions/subtitles, particularly on DVD's that have subtitles or special headphones that makes life so much easier to listen to music. There are phones that you can have access to which indicate that someone is ringing you by a flashing red light as well an amplification button.  The TTY (teletypewriter device for the deaf) is a phone provides a number functions such as a relay service, or you can type on a keyboard and send another person the message.  You are also entitled to have access to a fire alarm which has a vibrating pad to put under your pillow as well as a remote control box with a flashing red light so you can feel and see that there is a fire in your house.  Accessing these devices will apply to those who are eligible and can be arranged through their GP,  audiologist or any hearing resource center in your community. 


Personal Relationships

      Maintaining a personal relationship with someone you have just met or have become attached to, also has some difficult challenges that are often encountered with a hearing impaired person.  It is always advisable to inform your potential partner from the very first time you meet, so they are aware of your disability.  It allows them  to  make a choice to support you or not.  I have to warn you though, some partners are terrified of being in a partnership with someone who has a disability, so prepare yourself for rejection.  It really takes a special kind of person to not judge you. 

     I have had a few incidents when I was much younger, where I would have a date with a guy, go to the pictures and even though I could not hear what was being said on the screen, it was even more frustrating not responding to a date who is trying engage with you. Particularly sitting in the dark and not being able to read his lips.  Occasionally my date would say sweet nothings in my ear and I would pretend that I understood what he was saying but reply with a completely irrelevant answer.  I would never see that person again and would end up feeling hurt or rejected.  You will find yourself in an awkward position if you hide behind your disability and may possibly cause the relationship to deteriorate. 

    Partners who accept your disability need to keep in mind that understanding and supporting your hearing impaired partner will not only improve your relationship but it will improve their self esteem and enhance their confidence. 

     Partners who are not informed about your disability either will become frustrated, angry or resentful and more problems will start to develop as a time goes on.  This is because your partner has not been educated about the disability and has no insight to how it affects the hearing impaired person.  People with hearing impairment will often appear to be co-dependent on their loved ones, but realize that they trust you  as a hearing person as well as feel secure and safe knowing you have accepted them with all their flaws, no matter what they are.  This is what a good partnership is about.
     
     If you are lucky enough to strike gold and have met a genuine, caring partner then be honest and you will have a great chance of a successful relationship.