“The act of pleading or arguing in favor of something, such as a cause, idea or policy; active support.”
In the area of disability, there are three ways this may be applied: a) advocacy for another – i.e. where one person speaks out on behalf of another; b) self advocacy, where a person is speaking up on their own behalf; and c) systems advocacy, where an attempt is made to change laws, rules, or policies that impact the lives of many – this may happen at the national, state or local level and may involve organizations or governmental bodies.
Don’t Hide Your Hearing Loss: the Truth May be Better Than What They Are Thinking!
When we can’t hear or understand what is being said others may make incorrect assumptions about us. Because we don’t respond, or respond inappropriately to what is being said people may think that we are unfriendly, incompetent, insensitive or just plain uninterested and can lead to your or others’ embarrassment.
Better to let them know that you have difficulty understanding because you are hard-of-hearing and tell them things they can do to make communication better. And, if you are delaying dealing with your hearing loss make a bee-line to your hearing care provider because:
Once A Hearing Loss Is Detected, Much Can Be Done. Read On.
There is an old adage that is relevant to Advocacy and Hearing Loss: Knowledge is Power.
The more we know, the better we will be able to advocate for ourselves and for others. What can of things do we want to know about? About ourselves, about our hearing loss, about equipment and services that can help overcome hearing loss, about our rights as citizens with hearing loss. The other sections under the webpage INFORMATION is this website’s attempt to provide information in these areas – but first, let’s examine ourselves.
The Emotional Side of Hearing Loss
Frustration and Other Emotions
Hearing loss is difficult. We are constantly put in situations in which communication is difficult and we naturally become frustrated. We need to realize that the struggle to hear takes its toll. Each time we are faced with a situation that is difficult for us, we may feel any number of emotions: humiliation, anger, frustration, sadness, or discouragement. Even though we may be assertive and up front about our hearing loss, these emotions remain. We need to recognize how much it impacts our energy to be out there day in and day out,admitting our loss, making our communication needs known and facing obstacles.
When we ask someone to repeat what was said and they roll their eyes or their tone of voice tells us we are bothering them it hits us in our self-esteem. When we want to attend an event and we request an assistive hearing device or computer assisted communication, and the person in charge decides what we have requested is not “appropriate” and that something else will be provided instead without asking our opinion — this is very emotionally difficult.
Many things affect our ability to hear. Many hearing people do not understand that if they refuse to listen to us or tell us what we can or cannot hear, we feel devalued. When we ask people in meetings to take their hands down from their faces so we can lip read, or to have only one person talk at a time—and they remember for only a few minutes or until the next meeting—we need to deal with our feelings of frustration and discouragement.
Some days we are stronger than we are on others. We have the courage and strength to keep trying until the situation is straightened out. Other days we may want to simply crawl into bed and pull those covers up over our head. On our good days, we have the courage to take care of ourselves and acknowledge that being assertive takes energy and sometimes takes away from other parts of our life. We need to surround ourselves with people who understand, people with whom we can share our experiences, people who will help us remember that life is good and we are worth it. We need people who can help us by listening and encouraging us.
And then there are some people in the world who “just don’t get it”…yet. And they won’t unless we continue to try to teach them. The fact is that hearing loss is not an easily understood condition. But we can learn how best to cope with it and then teach the world.
Hearing loss is emotionally painful for many reasons. Our need to communicate is so constant, the situations and environments in which we need to hear are so varied, the support of others is so uneven, and technology, alas, can often break down so there is little respite from our loss. Thus, our hopes and expectations can be frustrated and we experience a myriad of emotions.
How do we deal with those times, and those feelings? Unfortunately, just as the behavioral skills for coping with hearing loss are not automatic, so the skills for dealing with these emotions are not instinctive, and need to be learned. The process of dealing with our lost hearing is one of “going through” stages of grieving. Mourning constitutes a set of behaviors and thoughts by which we can better move through those feelings of grief toward a will to adjust to the challenges of life.
Denial is usually the first stage of grief and is the result of the deep fear that hearing loss evokes in us. The mourning that we must do here is to work toward acknowledging that fear, and know that all human life fears the loss of health and happiness. We are not as alone as we think.
Anger occurs when we burst through the fear and demand of life that somehow, anyhow, we deserve happiness. The great Beethoven, in his response to his growing deafness, showed us how to do the mourning that moves us through anger. He presented his anger to the whole world, but he did it in beautiful ways. We can’t all be geniuses, but we can all find constructive ways to assertively voice our commitment to life.
Bargaining is a stage in which we acknowledge our disability in a halfhearted way, really still hiding, still in fear. We may, for example, buy and wear a hearing aid, but we hide it, and we don’t really help others communicate with us. Here we need to intelligently analyze our situation, and be sure that we aren’t doing ourselves a disservice, moving a step backward for every step forward.
Depression may happen when we finally stop hiding, and allow ourselves to experience the sadness of our loss. Sadness is natural, and is a healthy response. Mourning nurtures, even cherishes this sadness — when you don’t fight it. It will gradually lessen on its own, allowing you to begin acting effectively again.
Acceptance and adjustment come when we consciously work to minimize the handicapping effects of the hearing impairment, and go forward doing what we must. After all, everyone is flawed, everyone is mortal, but life goes on.
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