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The Who, What, When, Where, And Why of Support Groups for People with Vision Loss

group of diverse individuals holding hands and smiling
Group Holding Hands and Smiling

Editor’s Note: This is one of a series of articles and posts we are planning about the critical role support groups play for people who are blind or visually impaired. We plan to feature topics such as how to locate and get the most out of a support group and ways in which groups can be helpful throughout the adjustment process. This post will serve as an introduction to the world of support groups.      

Overcoming Fear and Uncertainty 

Help! I can’t see! Fear and uncertainty are emotions felt by all who experience severe vision loss. Everyone, regardless of social, economic, or educational background may think that life is now over. Life as you know it may be different, but a new life of challenge and adventure awaits.   

Rebuilding Your Life After Vision Loss 

Most communities have a wide range of services designed for people with vision loss. It is essential to take advantage of all the services available, as they each play a different, yet equally important role in the total adjustment process. Re-building your life is like putting a puzzle together. Each service represents a different piece of the puzzle. Each puzzle piece is necessary before a beautiful picture is created.  A support group for people with vision loss is only one of many pieces of the puzzle but it often has a powerful impact upon those who attend.     

While support groups are not designed to take the place of personal counseling and other specialized services like orientation and mobility and technology training, support groups will help you put the finishing touches on the person you are becoming. 

Who Attends a Support Group?    

Support groups are beneficial for anyone at different ages and stages on their journey with vision loss but there are three groups of people who find participation to be most helpful. 

  1.  Individuals recently diagnosed with a vision loss. 
  1. Family members and close friends of people who have a vision loss, especially those who have been recently diagnosed.  
  1. Individuals who are in various stages of adjustment to vision loss.  Even those who have been blind or low vision for many years. 

Who Sponsors or Facilitates Support 

Groups for People with Vision Loss? 

Support groups for people living with vision loss are usually sponsored by a federal or state agency such as the Veterans Administration or the state office of Vocational Rehabilitation. Local agencies such as rehabilitation centers or low vision clinics may also sponsor a group. Some churches offer or host support groups for people with vision loss as part of their ministry. Some groups have a professional service provider attending or running each meeting. Other group facilitators may be volunteers who are visually impaired themselves.              

What Is a Support Group for People with Vision Loss? 

This type of support group is a gathering of people who have been impacted by vision loss. The primary focus of these groups is to encourage, educate, empower and support one another. Members share information and resources as well as their own tips and experiences on living with a vision impairment.            

What Can I Expect When I Attend? 

Regardless of what part of the country you are from, you can always expect a warm welcome. Members of support groups find it heartwarming to meet and potentially help other people who are on the same life journey. 

Each support group has a character all its own. The vast majority of groups provide a wide range of information related to vision loss and how it impacts life.   Groups often focus on a different topic each time they meet. Topics may include description of services and programs, introduction to adaptive equipment and technology, and general conversation about vision loss. These groups may take an occasional field trip to visit local places of interest such as museums and parks.   

Some support groups are more specialized or devoted to specific topics related to vision loss or to specific eye conditions such as macular degeneration or retinitis pigmentosa. There are groups that address the stages of adjustment to vision loss and are often led by a trained counselor. Others focus on giving back to the community and volunteer at local soup kitchens and community centers. Some like to work on arts and craft projects or play accessible games. Still other groups simply go out to eat once a month. Book clubs are also a part of some groups. 

That’s all to say that the scope of groups varies just as much as we do. If you happen to live in an area where there is more than one type of group, take advantage of them all. Sight loss impacts all aspects of life and we need to be equipped to meet every challenge and gain different perspectives.   

Before the pandemic, some groups met in person and others met by telephone or virtually. Virtual groups were becoming popular before COVID 19 hit the scene because they helped solve transportation challenges faced by many people with vision loss. When COVID became a part of our lives, virtual groups increased in number as people sought ways to keep meeting and stay in touch.     

Why Should I Attend A Support Group for People with Vision Loss? 

  1. People Help Each Other: By actively engaging with other people you will re-gain hope and see a future again. 
  1. Vision Rehabilitation Professional Contacts: You will learn about vision rehabilitation service providers and get connected with services and programs which can help you live with vision loss. 
  1. Education: You will learn about eye conditions and adjustment to vision loss as well as techniques and equipment which will enable you to perform tasks you once thought were exclusively for sighted individuals.
  1. Self-Advocacy: You will learn how to successfully advocate for yourself and others. 
  1. Problem Solving: You will learn how others overcome various challenges related to vision loss and be ready to develop your own problem solving techniques. 
  1. Mentor: You will probably meet someone who will become your mentor and then you might go on to be a mentor for another person in the future. 
  1. Fun and Community: You will expand your circle of friends and have fun learning together, growing and becoming your new self after vision loss.   

Where Can I Find A Support Group? 

Audrey Demmitt, another peer advisor, has written about virtual support groups. She also includes a list of agencies offering them as well as supportive communities. 

VisionAware has a directory of agencies that includes support groups for people with vision loss. If you are a veteran, contact the Veterans Administration near you.  Even Facebook has some very good support groups. 

When Should I Start Looking For a Support Group? 

Right Now!         

Find Out More about Support Groups 

Be sure to read more about the benefits of joining a support group, what you should consider, and how to get the most out of a support group.  

Check out Support Groups and Other Resources – VisionAware