Failing Sight and the Family Plight
(You can download a Microsoft Word bersion of this brochure
This publication was very much a collective effort. Not only did it involve outstanding efforts by the members of the CCB Seniors with Vision Loss Committee, but it also embodied work of members of the CCB Publications Committee and other CCB members.
In particular, the Antelope Valley and Compton Chapters of the CCB made essential contributions. Finally, thanks are due to Reverend Gussie Morgan for the idea which became this pamphlet.
Bonnie Rennie, Chair
CCB Seniors with Vision Loss Committee
Cover graphic courtesy of Jean Ackerman
Life is still interesting, life is still good. But it sure isn't the same as it used to be! If you're the family member or friend of a senior who now doesn't see so well, you know! Perhaps it's a parent, the one you once depended on, the one you want your children to remember fondly. Or it's your spouse, a special aunt or uncle, a brother or sister, living close by or far away. In any case, it's someone you care for and worry about.
Vision loss! It feels as if an uninvited, unwelcome visitor has unexpectedly barged into the house! Once inside, this unpleasant fellow announces he has come for an indefinite stay. Maybe his annoying presence is only occasionally felt at the dinner table. He is a minor aggravation to be worked around. Or he will not be ignored, leaving a wake of hardship and despair throughout the house. Either way, it looks like you're stuck with each other. But he doesn't have to sit in your favorite chair by the window and soak up all the sunshine. You don't have to let him set up his roller coaster of emotions and drop all his baggage, you know, anger, anxiety, fear, and grief all over your living room. With training, he will behave himself, and at some point, he will at least fit in.
We know all this, because we have been there, and are there ourselves. As members of the California Council of the Blind, (CCB), a nonprofit organization of people living with vision loss, we believe we are in a good position to offer you a message of hope. Our expertise comes from having navigated the turbulent waters of visual impairment. We don't claim to speak for all people with low vision or blindness or for all situations people may face. Yet, our perspective, based on experience and careful reflection, may be of benefit to you.
What follows are some suggestions for your consideration. They convey what a number of visually impaired seniors tell their families, or wish they could, about how to handle some common challenges together. It is our hope that this subject matter will spark a lively discussion in your family and that you will be encouraged to take positive action.
We want to say thank you to you, our families and friends, for who you are to us, as well as what you do for us. This is the point we have tried to make. It is vital that we all have faith in our capabilities and are open to learning new skills to meet the demands of our situation. So much is possible when we do. And the road is easier and more pleasant to walk when you don't walk it alone. CCB is here for you. We hope that reading this has given you some food for thought and that you'll want to find out more.
- If we tell you that we can't see something, please believe us. You may never figure out what we low vision folks can and can't see, or the differences that things like lighting, contrast, time of day, and a host of other factors can make. Among those of us who meet the definition of legal blindness, there is a very wide range of visual abilities. Many see quite a bit, and most others retain at least some usable vision. It's better to rest in the knowledge that it's our job to let you know if we need assistance, and what that assistance might be.
- You can help us deal with the environment. If you know that we use a mobility cane or a service animal and we are going out together, you can expect us to bring along and use our chosen mobility aid. You may be a terrific guide, and we want your company. The cane or dog gives us important information about the environment and keeps our travel skills fresh. Perhaps you can tell us about upcoming changes in the ground surface, such as from tile to carpet, or say, for example, "curb up," or "stairs down."
- Things can be made easier in the house. If you're planning to rearrange the furniture, please let us know. Our shins will thank you! A plea from even the most independent among us, please be careful not to leave doors, and especially face-level cupboard doors half-open. Ouch! If you are helping us with the housework, do try to put things back where you found them. It aids our independence. This raises the point that if we are otherwise physically able, should we not be the one to do our own housework?
- If you have agreed to read our mail to us, please mention each item, so we can prioritize it. Similarly, when reading a letter addressed to us, do read the letter, not the edited version. If you think about it, would you want someone else deciding for you what you need to read and what you don't? You may understandably feel that this task is too time-consuming for you. In that case, it may be best to tell us frankly. Although finding reliable readers isn't easy, there are a number of ways we can locate the reading help we need. It may be less stressful on our relationship if we don't become exclusively dependent on you.
- Little words communicate a lot! We want you to be comfortable using words like "look," "watch," and especially "see" around us or to us. Perhaps we enjoy TV or a movie differently now, or "see" better with our mind, heart, and other senses. Maybe some of us are overly sensitive about the subject. Yet when you avoid using words like "see" around us, it says to us that you have not accepted who we are, or that you are feeling so bad about what we, and you have lost.
Even the word "blind" is too difficult for many to say. Words are not the problem, our fears and attitudes can be! Instead of saying things like "this way", "it's over there", you might turn and speak in the direction you mean to indicate. Later, with training, we'll learn to ask you for useful directions.
- Now that we're dealing with many changes, let's increase our open communication skills. As you can see, some of our needs and wishes may conflict with yours, or perhaps issues may have arisen that are difficult to talk about.
For example, you may fear that now you've lost the best cook or handyman in the family, the one who entertained the grandchildren, or had such great plans for retirement. You could be silently hoping that our limitations won't end up tying you down. That's not an easy thing to admit. True, no one has actually died. Yet the pain and losses may still need to be grieved from time to time, so we can all move forward. Having a safe place and an understanding person to talk to is important. So is learning as a family to negotiate and problem solve, and have confidence in the skills of living with a visual impairment that we have acquired and then practiced.
- Here are some good places to turn to for help. This is the briefest description of three such resources. They all have locations throughout California and in many parts of the country.
- California Council of the Blind. This is our organization, and naturally we recommend it highly! It has local chapters, where fellowship, support, advocacy, education and often laughter abound. Its statewide committees and affiliates tackle issues such as those of seniors, access to transportation and information, concerns of those who use guide dogs, computers and the library.
- The California Council of Citizens with Low Vision (CCCLV), an affiliate, is an excellent source of information and encouragement through its publications, mentoring and convention sessions. Resources include a health library, with medical information in accessible media. In addition, we, the members of the CCB Seniors with Vision Loss Committee can be of great assistance to you. To learn more, contact us toll-free at (800) 221-6359.
- Agencies or Centers serving the Blind and Visually Impaired or Partially Sighted. These are private nonprofits, providing a variety of services. Many offer training in the skills of independent living, such as finding one's way around, how to cook, do laundry, handle our money, and more, all without normal sight. Some also offer enriching classes, for fun and for getting us out of the house once or twice a week. Many have support groups, including some just for families and friends.
- State of California, Department of Rehabilitation. It's not just for job-seekers. Staff called counselor-teachers go into the home and teach many of the skills of independence listed above. The goal is for people to remain in their own home, with maximum independence. Seniors who have low vision or are blind may be eligible for this service. You never know what positive things can happen when you reach for some outside help.
- Why not do something really helpful for us. Ask us for some help! One of the hardest things about having a disability can be the low expectation of others.
The best gift you could give us may be to want, and better still, to ask for our help. We can tell stories to the grandchildren or help them with their spelling, do chores, write letters, be a phone-tree activist, and more. All it takes is a little creativity and a positive attitude.
- Please do us a favor, take good care of yourself! If we're newly visually impaired, you may be tempted to put our needs first for a while. After all, you reason, we are the unfortunate one with the need. But however noble your intentions may be, doing so will eventually lead to conflicts and resentment.
Of course, your needs and ours are both equally important and legitimate, which is where the communication part comes in. We regret that our vision loss has probably added to your load of stress. It may seem like it's the last thing you have time for, but it becomes crucial that you schedule times and activities into your week that are meaningful and restorative to you. You know what best helps you to relax, laugh, feel connected and cared for. The rest of the week will go better when you take this time for you. We know, you deserve it!
This publication has been developed by your friends at the
California Council of the Blind
Seniors with Vision Loss Committee
It is available in large print, braille, audio cassette, and electronic formats.
Copyright 2003, 2004, 2006
California Council of the Blind
(800) 221-6359 (California only)