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AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

Lesson 18: Adjusting with Vision Loss One Day at a Time

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In earlier lessons, you were encouraged to take charge of every area of your life as a person who is blind or has low vision. You were told that with just a few techniques you could become productive again and live more independently or interdependently. Here you are at Lesson 18—CONGRATULATIONS! So…you must have felt inspired to take the challenge like other visually impaired individuals and, like them, are gaining confidence on the road to living with a visual impairment one day at a time.

Through the lessons in this series you've learned techniques for dealing with the effects your visual impairment has on everyday essential tasks like personal care, housekeeping, home repairs, travel, reading, and writing as well as some ways to relax and have fun through recreation. Although your new skills are helping you to realize that vision loss isn't as limiting as it once may have seemed, you may still have times when you feel overwhelmed, worried, and even depressed. Maybe your self-esteem and self-confidence are still shaky. These and other feelings are a natural part of the coping and adjusting process. Everyone deals with visual impairment with their unique personality, characteristics, abilities, and coping skills. And everyone works towards goals that are personally meaningful. The purpose of this lesson is to give you some tools and resources to empower you to live every day as an individual who just happens to be visually impaired.

Lesson Goals

  • Cope better with the various emotions that accompany vision loss;
  • Plan ways your support team can best assist you in your adjustment to vision loss;
  • Utilize activities toward healthy emotional growth;
  • Select a support group so you can share concerns with others who are losing their vision and people experienced in handling the challenges of vision loss;
  • Participate in a national consumer advocacy organization and actively meet the challenges faced by visually impaired people on all societal levels;
  • Develop appropriate communication skills to effectively advocate on your own behalf.

Click here to review the learning checks before reading the lesson.

Adjusting to Life with Vision Loss

Each person adjusting to vision loss experiences different emotions, at different intensities, for different lengths of time. In time, most of the fears, disappointments, anger, and even depression can be managed as you learn to live independently and cope with life with your visual impairment. However, some of the feelings may recycle throughout life as new situations arise, and some might never go away. There may be special occasions or traditions you would like to see—a grandchild on his first birthday. Your family may have enjoyed driving around to look at holiday scenery. The sadness you experience with the loss of these visual experiences may lessen in intensity as time goes on, but it might never go away completely. You might find certain things embarrassing, such as not recognizing someone you pass on the sidewalk or realizing you are talking to a blank space because the person you were talking to has walked away. Remember, even when you could see, you probably did some embarrassing and inadvertent things too.

Much is written on adjusting and coping with disability, but Self-Esteem, Adjusting with Blindness (Tuttle & Tuttle, 2004) is one of only a few texts that specifically address vision loss. Its authors describe “adjusting with blindness as the continuous process of adjusting to the daily demands of life with the added characteristic of vision loss.” Low vision or blindness is not an external circumstance you finally "adjust to" at some point in time, such as adjusting to a new job or new home. It’s the total person with all his or her attributes, including vision loss, who finds ways every day to deal with life's demands.

The stages of adjustment don't occur and then disappear. They overlap and are often jumbled together. Just when you think you no longer have to deal with anger or depression, they come bursting through your door again. You feel like you can finally smile again, but then the tears return. You laugh, but the cloud of depression drifts in once more. Don't beat yourself up. This is normal. This is necessary. This is part of healing, and it can be painful. Hadley School for the Blind offers a course based on the book Self-Esteem, Adjusting with Blindness. This course has helped hundreds of people handle their grief over vision loss.

See the VisionAware Resources list at the end of the lesson for more information on coping with blindness.

Your Support Team

You need to feel like an important, contributing member of your family and the other groups you belong to. You need to feel valued by others so you can strengthen your self-esteem and self-confidence. The nucleus of your support team is made up of the people who "have your back." They are your cheerleaders, willing to urge you on when you are hesitant or lack confidence. They may or may not be your family, friends, or coworkers. They are the people who will give you honest feedback when you need a big push but will give it in such a way that your spirits stay up. In the early stages of adjusting to your vision loss, you need support that's fair and balanced—not so helpful that you don't learn how to do things yourself, but just enough to help you keep going. Help others understand your vision problems by telling them what you can do independently, what you need a little help to do, and what you need someone else to do. When you have gained some sense of healthy self-confidence, it is time for members of your support team to back off and allow you to apply what you have learned and exercise your personal independence. Chapter 9 in Self-Esteem, Adjusting with Blindness (Tuttle & Tuttle, 2004) gives some extremely good help for members of your support team.

See the VisionAware Resources list at the end of the lesson for more information on helping others understand your vision problems. 

Activities for Healthy Emotional Growth

You might be a member of a group of newly visually impaired people who tend to memorialize their former sighted selves. It's easy to forget that your sighted self ever burned the toast, wore two different shoes to a business meeting, got on the wrong commuter train, or committed any other mistake or accident. Some people who have been visually impaired since birth wrongly think that sighted people rarely burn the toast, never wear two different shoes to a meeting, and will always correctly read the track signs for the commuter trains. Too often, these misguided perceptions, along with social stigmas, prevent visually impaired people from recognizing that everyone—blonde or brunette, short or tall, young or old, blind or sighted—makes mistakes. Those misperceptions may hinder you from accepting and valuing your visually impaired self.

You may find it difficult to laugh at such situations if you are struggling to find your equilibrium adjusting to the demands of everyday life along with visual impairment. In time, you will realize one of the best therapies for learning to accept and value your visually impaired self is to laugh at your mistakes and to use humor to help sighted people relax if they are uncomfortable with your vision loss.

See the VisionAware Resources list at the end of the lesson for more information on learning to laugh at the mishaps associated with vision loss.  

Bibliotherapy

The cover of Lynda Lambert's book, Walking by Inner Vision, with a bright yellow flower on a green background

Since antiquity, books, especially biographies, have been used to inspire, encourage, teach, comfort, and counsel people about life, life's challenges, and difficult situations. The very nature of these books can be quite therapeutic, especially if the book addresses your specific problem or need.

See the VisionAware Resources list at the end of the lesson for more information on books on blindness and personal stories of individuals living with vision loss.  

Finding a Support Group to Meet Your Needs

Don't try to go it alone! Support groups bring people together who share a similar life challenge. In your situation, that challenge is vision loss. Joining a support group may be the most important thing you'll ever do. Whether online or in your local community, these groups offer opportunities to talk to other people who are losing their vision and people who are experienced in meeting the challenges of vision loss. Support groups share common concerns and together, find solutions for your vision-related difficulties. Through a support group, you can meet people who will empathize with you about your frustrations, fears, disappointments, embarrassments, and tears because they too have experienced similar feelings.

Some groups are led by laypeople who are visually impaired, and others are led by professionals who are independent living or orientation and mobility instructors, social workers, or nurses. The format of a group may include topical discussions, guest speakers, hands-on workshops, and demonstrations of special products for people with vision loss. A support group can be a great place to socialize and make lasting friendships.

See the VisionAware Resources list at the end of the lesson for more information on support groups.  

National Consumer Advocacy Organizations

Along with joining a support group, it's recommended that you consider becoming a member of one of the two major visual impairment consumer advocacy organizations in the US, the American Council of the Blind or the National Federation of the Blind. These organizations strive to increase the independence, security, equality of opportunity, and quality of life for blind and visually impaired people of all ages at local, state, and national levels. Joining one of these organizations can offer a host of benefits, including the following:

  • Meet and make friends with visually impaired people who share your profession, hobbies, interests, or goals.
  • Find hope and move forward after vision loss.
  • Access local and national networks of people with vision loss who can provide information and support about all aspects of living, working, learning, and thriving as a visually impaired person.
  • Advocate at local, state, and national levels to change misconceptions about blindness and policies and laws that affect people who are blind, low vision, or losing their vision.

These organizations are guided by the conviction that people who are blind and visually impaired are fully capable of representing their own situations and needs. They are governed by blind and visually impaired people, but encourage membership of sighted people—family members, friends, members of service organizations, and local, state, and national organizations—who will advocate for the organizations' core principles. Both of these organizations have affiliate chapters throughout the country.

See the VisionAware Resources list at the end of the lesson to find services for people who are blind or visually impaired.

Self-Advocacy and Effective Communication

Self-advocacy means speaking and acting on your own behalf. There are federal and state laws that protect your rights, and there are organizations that act on the behalf of visually impaired people at times fighting against discrimination, but, ultimately, living independently is your responsibility and part of that is learning to advocate for yourself.

Newly visually impaired people may act passively when treated in ways they do not like. At times, you may allow your significant other or another family member to do something for you that you know you can do yourself or want to do yourself. At other times, you may feel like you have been pushed around enough and get angry or act aggressively.

It is helpful to have a clear understanding of the differences between assertive, nonassertive, and aggressive behaviors. People who are nonassertive generally allow others to choose for them and unfortunately, seldom achieve their desired goals. At the other extreme are people so aggressive that they usually get their way, often at the expense of others. Being assertive means taking responsibility for what happens to you in life. Assertiveness enables you to make free choices for yourself without giving others the power to do so. For example, how often at a restaurant or store has a waitress or clerk spoken to your sighted companion rather than to you directly? Do you speak up for yourself and communicate the desire to be treated as a competent equal, rather than as a non-person? Or do you allow your companion to answer for you?

Below are some suggestions that may help you increase or improve your ability to respond assertively instead of nonassertively or aggressively.

  • Role-play several situations with a family member or someone else on your support team or with a trained counselor.
  • Introduce this topic at your support group meeting. Others in your group may also have difficulty speaking up for themselves. Perhaps you could role-play with each other or invite a counselor to come to a meeting.
  • Use The Ungame (The Ungame Co., 1975) as a means of openly and honestly expressing your feelings about a variety of situations. This game was developed by a woman who was unable to talk for two years. During that time, she realized how often people don't really listen to each other. The game sets up situations and then has the players respond to a question dealing with feelings or values in a safe environment. No one else in the group can say anything while a player is speaking nor can they respond to what is shared.
  • Keep a journal of experiences and when you are alone, reflect on what you might have done differently in certain situations or praise yourself or reward yourself when you've been assertive.

In time you will become more assured and will feel more in control of situations you encounter. Moreover, acquiring and using verbal and nonverbal assertiveness and communication skills will enable you to move more confidently back into the mainstream of society.

See the VisionAware Resources list at the end of the lesson for more information on practicing self-advocacy. 

Accepting Yourself and Your Blindness

Unfortunately, some people never fully accept their blindness. To be self-accepting, you do not need to like blindness, but you do need to internalize blindness as one of many personal traits—male or female, tall or short, blue or brown eyes, artistic or athletic, teacher or engineer, and, oh yes, visually impaired or sighted. Self-accepting people are those who have learned to accept all of their personal traits, the strengths along with the limitations. They are at peace with themselves; they are comfortable with themselves, and they like themselves. They recognize that everyone has some limitations and that limitations do not diminish a person's dignity and worth.

Understand that life can be as full and as rich as you choose to make it. If you spend your time on the possibilities and opportunities, life will be full and satisfying. The possibilities of life as a person with vision loss are indeed as numerous as you make them.


Learning Checks

Which of the following strategies are positive ways of learning to live and cope with your visual impairment?

  1. Join a support group
  2. Select overly helpful people for your support team
  3. Read books written by and about blind people who live meaningful lives in spite of their vision loss
  4. Remove yourself from situations that cause you to grieve your vision loss.

Answers: a and c  

What positive strategies can you use to advocate for yourself?

  1. Use humor to help sighted people relax when they appear to be uncomfortable
  2. Demand that your rights be met at all times
  3. Let someone else speak for you
  4. Explain your needs calmly without giving your power away

Answers: a and d  

When searching for a support group, what should you consider that will meet your specific needs?

  1. If the group is led by other people who are visually impaired or professionals who may or may not be visually impaired
  2. If the format focuses primarily on issues encountered by members, guest speakers, workshops, social activities, etc.
  3. If the group meets online or face-to-face
  4. All of the above

Answers: D

Which two options below are differences in belonging to a support group and a national consumer advocacy organization?

  1. Find hope and move forward after vision loss
  2. Advocate at local, state, and national levels to change laws and policies that affect people who are blind and visually impaired
  3. Meet and make friends with visually impaired people who share your profession, hobbies, interests, or goals
  4. Belong to an organization with chapters of like minded visually impaired people working throughout the country to level the playing field

Answers: b and d

Click here to return to the beginning of the lesson.


VisionAware Resources

The following links will take you to VisionAware online resources that support this lesson. Please be advised that information in these links may go beyond the scope of this lesson or this course.

Seven Lessons on Coping with Blindness

Coping with Vision Loss

Help Others Understand Your Vision Problems

From Personal Loss to Personal Growth and the Road to Independence

Laughter Is Often the Best Medicine: A Series of Vignettes About Life’s Funny Moments

Books on Blindness to Enhance Mental Health and Well-Being

Reading Books on Blindness and Learning About the Experiences of Others

Personal Stories: Living with Vision Loss

Support Groups: Their Role in the Adjustment Process for People Who Are Blind or Visually Impaired

Find Services for People Who Are Blind or Visually Impaired

Your Rights: Practicing Self-Advocacy

Citations

Tuttle, Dean W & Tuttle, Naomi. (2004). Self-Esteem, Adjusting With Blindness. Springfield: Charles C. Thomas.


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