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Tips For People Who Are Blind and Coping With Hearing Loss

Editor's Note: Penny Leclair is the NFB:AE's 1st Vice President. She can be reached via email at: penny.leclair@rogers.com

Photo: Head shot of Penny Leclair.

Canada offers little in the way of services to help people cope with both hearing and vision loss. It is important, therefore, to utilize what is available and learn from those who have experience with deaf-blindness.

I have always been blind, and 25 years of declining hearing has taught me some things I would like to share with those who are beginning this experience, or know someone who is.

By far, the majority of people who are deaf-blind acquired one of their disabilities subsequent to the first. Those who are deaf may later lose their sight, and those who are legally blind may later lose their hearing. Deaf-blindness, furthermore, rarely means total deafness or total blindness. The term "deaf-blind" is used when communication becomes a problem, and this usually occurs far before complete hearing or vision loss takes place.

Currently, people who are blind and who lose significant hearing can get some support from the Canadian National Institute for the Blind, or from an audiologist through hearing aids and other accessories.

But how do you cope? People don't know how much your hearing means to you if it is taking the place of lost sight.

It is helpful to link up with others to learn and to receive support. Become a member of the NFB:AE. Access the help provided by its mentorship program. Meet others who share the experience.

Reality is that this loss is more than an added inconvenience. It becomes important to change how you communicate, how you experience the environment, and how you assess capability for travel. You must build an awareness of what has been lost, if possible, and determine if things can be done another way or if it will mean giving up some independence. This awareness is most difficult, yet it is this awareness that brings about the realization that life is changing and you do have some control.

Coping with emotional difficulty and major changes in how to communicate takes place over time. Assessing where you have to be in, say five years, and how to get there takes courage, hard work and support.

How much hearing have I lost? How much hearing is likely to decline in five years? What can I do today to make tomorrow easier?

Begin to learn ways you and your friends and family can communicate. It is easier to learn while you still have lots of hearing. Learning is active. It gives you something to do, and this helps to give you a sense of control.

Know the technology you can make use of should you need it. Learn where funding sources are in your community. Take time to learn this now because trying to gather information when you have difficulty understanding what people say is something you will find difficult. Consider learning how to use a computer. It is another way to communicate.

Loss of hearing will affect your family and friends. Don't wait to involve them. It is easier for everyone to learn new things when you still have enough hearing to help the learning process along.

Sign language. Printing on the palm. Gestures for getting a message across quickly. By including your family and friends, you help prepare them for the day they may have to use different methods to communicate with you.

I learned to use American Sign Language (ASL) and British Two-Hand Manual to communicate with new friends who were deaf-blind. But I didn't involve my friends or family. I waited for so long before telling others I needed to use a different way to communicate that they found it intimidating to learn once

I couldn't hear well enough to help them. If I had involved them, all would have felt prepared for the day change was necessary.

Tell people how to best help you. Educate and then remind them. Because it is not just your problem. Communication is two ways.

It is a good idea to ask people to get your attention before they start talking. Tell people how much you want to continue to communicate with them and that you will show them how.

I used the wrong strategy! I would ask someone if they wanted to learn--a yes or no answer. I wish I had told them how much I wanted to continue to talk to them, and then explained how they could continue. You have to make it easy and comfortable for others.

There are other adjustments that involve the people with whom you interact. Since hearing aids make things sound more similar, I always have to ask who was talking. People had to learn to identify themselves.

With declining hearing, furthermore, you have to adjust to doing things differently. Sense of direction is not as accurate, for example, affecting your ability to travel, and you may have to ask for more help. If you can't hear the water running, you will train yourself to check the tap before walking away, or you will have a water mess to clean up! After a few of these, you adjust to a new way of doing things.

Also, there are activities that you may not want to continue. I recall when music sounded awful due to my limited ability to hear. I tried to think of things to learn or do that would take the place of enjoying music. I learned to garden--something I love now.

Keep thinking positive. We change and learn new activities. It is not all bad. Concentrate on what you can do. Be creative and think of how you can do something in a different way.

Email, for instance, has taken the place of the phone, and it has many advantages. I miss the use of the phone, but I replaced it and most people I communicate with have a computer. Even a few family members have learned computer skills because of my hearing loss--a real plus for them-something they had said they couldn't do.

I must admit that losing hearing has been the worst experience of my life, yet it has not diminished my life. I will do the most I can and be satisfied. The life I live is in my control.

I look to the future, not the past. How can I make my future the best it can be? Creativity. Asking others to do things differently. Staying current with what technology can do to help.

Surround yourself with supportive people. Even though you may be treated differently by some people, those friends and family who are a part of your support team, those you have educated, who have learned different ways to communicate with you, won't change who they are and they won't treat you differently. Count on this group--it does not matter if the group is two or twenty.

Take the time to give yourself a pat on the back. Use your success in various aspects of your life to remind you how strong you are and how capable. At times, you will wonder how you are going to cope, but just allow yourself to believe in who you are, how you have met all challenges and succeeded.

Even though hearing loss might have caused you to feel less of a person, don't forget you have grown and are a better person for it. Concentrate on who you are. Do things you really want to do. And above all, don't allow the disability of deaf-blindness or the attitudes of others to define you. No matter how much hearing you lose, you remain who you are.

Note: The Canadian Helen Keller Center (CHKC) helps people who are deaf-blind and is located in North York, near Toronto, Ontario. Contact CHKC: 210 Empress Avenue, Toronto, Ontario M2N 3T9; Phone (voice or TTY): (416) 225-8989; Fax: (416) 225-4871; Email: deafblindinfo@onramp.ca or cdhelenkeller@on.aibn.com and Website: http://www.chkc.org

Photo: Penny Leclair speaking with John Rae, through an intervenor. John is presenting Penny with the 2004 Annual CCD/NFB:AE award.

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