Low-vision support groups: sharing the burden of blindness

In January 2015, I joined a local university’s low-vision support group. On my first contact, I met a male and female pair of co-facilitators who run the support group. One was a former Low Vision staffer and Masters in Rehabilitation Services, while the other was a Ph.D. in Neuropsychology with a special interest in vision.

The low-vision support group meets twice a month during the school year and has existed for about 35 years. Patients who may benefit from this low-vision support group are referred by the University’s Low Vision Clinic to attend a meeting. 

Although there may be as many as 25 members on the roster, average attendance numbers are about 10-12 people per meeting. Eye diagnoses include Glaucoma, Retinitis Pigmentosa (RP), Macular Degeneration/ Dystrophy (MD), Post-acute eye trauma, and Retinopathy of Prematurity (ROP) (the latter being my active diagnosis). The common denominator for all of us is severe, progressive, and chronic visual impairment, often resulting in blindness. For many of us, our job status has changed or ended, as have our activities of daily living (ADLs).

When I first walked into the low-vision support group, two brown tables lay parallel to each other. There were twelve people in the room, half men and half women. At my first meeting, my vision was 20/60, the best field of vision of the group besides the coordinators. I could still see people’s faces, hair color, physical attributes, and facial expressions and make eye contact with others. 

This meeting was held in a light faculty conference room which had one entire wall with open blinds, producing a lot of glare. Several members had their white canes, and most of the group members gave me friendly greetings and had expectant faces turned toward me.

At the beginning of the support group, one coordinator poured cups of herbal tea while the other passed around a basket of popcorn, some home/store-bought cookies, and peanut butter pretzel treats. Any place with popcorn immediately gains my approval since that is one of my favorite snacks. After hearing warm and inclusive greetings from other members, I sat down and faced away from the windows and their glare. As we settled into the opening remarks of the group, I learned of several support group tenets – mentioning your name and eye diagnosis, the confidential nature of group processes, and each meeting either having a scheduled speaker or a more free-form conversation led by the needs of the low-vision support group.

I introduced myself, my first and last name, and my eye diagnosis of Retinopathy of Prematurity and cataract removal. I mentioned that I was nearing the end of my nursing career. My vision had diminished enough that I could not fully see the computer screen and complete my role as a care coordinator within the foster care system. 

I also acknowledged my gratitude for joining this low-vision support group so I could feel more connected to the visually impaired community since I was the only one I knew of in that boat. My introduction served to open many recollections of job change/job loss and coping mechanisms that have helped. I immediately noticed that I felt a sense of relief in connecting to those who were more like me.

As with many special interest or therapeutic groups, the commonality of the visual challenge created a palpable bond and connection within my low-vision support groups. It was my safe space away from the sighted world.

I felt at home with the support group. I felt no need to prove my worth, nor did I worry about making a foible– such as misidentifying a person or bumping into someone unintentionally due to my foggy vision. 

I immediately discovered that I could leave my baggage surrounding my blindness at the front door. My fears and shame dissipated, and I became an open member of the group.

This flock of VIP’s (visually impaired persons) has shown its wings, both individually and collectively. The collective consciousness is not one of hopelessness or victimization but rather of solidarity and shared experiences. There is no defensiveness, nor is there a need to assert or to compete. In the world at large, I feel my deficits or inabilities more acutely in social and professional settings. This group represents a level playing field, which I do not experience in the sighted world.

Our facilitators recognized the support group’s need for enrichment and new information, so guest speakers are arranged to talk about different subjects every few months. These talks include the psychological issues for the visually impaired or the pioneering scientific advantages that provide hope to the community, such as stem cell research for degenerative conditions. There are summaries and handouts, with bolded text and larger fonts available for the members at these lectures and presentations.

The ebb and flow of comradery in the support group prevails beyond the confines of the scheduled meeting times. A member roster with names and contact information allows us to contact each other outside of our prescribed meeting dates. Since I joined the group, there have been opportunities to take advantage of extra activities such as hikes, dinners, or events at other members’ houses. 

There are camps available at Enchanted Hills in Napa and even community excursions, such as special access days on given Mondays throughout the year at the De Young Museum in San Francisco. Interests in the group have sparked sharing our favorites with each other, such as the Oregon Shakespeare Festival in Ashland, which I experienced with my husband in October of 2018. I have also received a very personalized list of about twenty books from a group member’s daughter, who owns a local bookstore.

The benefits that such low-vision support groups provide me and its other members include limitless resources and shared experiences. One time, a member brought her guide dog; later, another member excitedly anticipated going through the guide dog training, which sadly had to be postponed due to the pandemic. 

I have discovered that the burden of my blindness is lightened by the mere sharing of the load and the comfort inherent in finding others like myself. I look forward to the arrival of the second and fourth Tuesday of the month with anticipation and pleasure. I have become one of two co-facilitators of the group based on our ability to help us stay focused on the process, track people’s participation, and encourage those who have not yet spoken to share. My watchful eyes have become more attentive ears to keep the focus in our sessions.

Since the regular focus group meets only during the school year, some of us continue to foster our relationships by meeting at a local café during the summer. We are always happy to see each other and fill the room with hugs and laughter. Our conversations include our summer activities, changes in our lives, new hurdles, challenges, and victories. 

One member solidified his decision to pursue surgery for his glaucoma with another group member’s support and guidance. Another member processed how his life has changed with his wife’s recent stroke.

Beginning in March 2020, we maintained our connections during the covid-19 pandemic via Zoom's invaluable tech platform. Although it is not quite the same as seeing each member in person and hearing their voices and hugging them hello and goodbye, I am satisfied with just the tones of their voices. We continue with our established structure with the support group leader identifying the next person to speak to maintain some semblance of order since many of us cannot see the speaker as profiled. I feel grateful that this allows us to transcend the shelter-in-place and social distancing to connect us every two weeks. I can connect even without the benefit of vision.

If I could send off a carrier pigeon with a message in its beak for other blind persons, the message would be: “Find a low-vision support group in your community.”

How to find a low-vision support group

There are a number of ways that you can find a low vision support group for you. You can start by asking your eye doctor or check with your state rehabilitation agency or a local low-vision rehabilitation center. Staff members in these offices will be able to connect you with local resources relevant to your needs. Other sources for locating potential low-vision support groups include senior centers and retirement centers.

You may also search online for low vision support groups. Free professional organizations near you offer group classes and workshops, which you can find with just a web search for ‘low vision rehabilitation' and 'low-vision support groups near me.'

Source: Braille Institute of America