Failing sight and the family
"Family is so important! Having a strong support system is key in adjusting to any challenge. Family members need support and encouragement too. We are here to walk along side you. Please know that the Council is very much your family."- Cindy Van Winkle
Life is still good. But it isn't the same as it used to be. If you are the family member or friend of a person who has lost their vision, you know. Perhaps it is your parent, the one you once depended upon, or perhaps your spouse, a friend, aunt, brother or sister. In any case, it is someone you care for and worry about.
When vision loss hits home
It feels as though an uninvited, unwelcome visitor has unexpectedly barged into the house! Once inside, this unpleasant visitor announces he has come for an indefinite stay. Maybe his annoying presence is felt only occasionally at the dinner table; a minor aggravation to work around. Or perhaps he is an obnoxious fellow who will not be ignored, leaving a wake of hardship and frustration throughout the house.
Either way, it looks like you are stuck with each other. But he doesn't have to sit in your favorite chair by the window and soak up all the sunshine. 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 blind community, 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 ourselves. 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 people 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.
1. 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 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.
2. 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.
3. 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, 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?
4. 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, read the entire letter, not the edited version. If you think about it, would you want someone else deciding for you what you need to hear 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.
5. 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" or "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.
6. 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 you've lost the best cook or handyman in the family, the friend you always did things with, or that the person had such great plans for their life. 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 loss 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.
7. Do you want to 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.
8. 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 one with the need. But however noble your intentions may be, doing so will eventually lead to conflicts and resentment.
Your needs are equally important and legitimate as ours, 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. That's why it is 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.
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 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.