By Dan Sullivan
For those of us dealing with vision loss, there seems to be two stages in our lives. The first is the acceptance of this dilemma. The second is figuring out how others in a similar situation do the same. This later stage often translates into club and organization involvement. As such, there are lots of options with varying results.
As many of us have discovered, it is sometimes a struggle to find good fits. I’ve tried getting involved by attending meetings and conferences associated with the major advocacy organizations. Although the results are often positive, far too many are negative as well. Meant to create common ground, these gatherings can unfortunately end up as a malarkey of personal agendas.
When talking to any veteran of vision loss, he or she is sure to have tales of intriguing encounters with advocacy groups delving into social, health, employment, and other issues that somehow become contentious. Oftentimes this begins by attending a meeting of the local chapter. Your initial and ongoing experiences with this group will now vary according to your age, employment status, education, and most of all, your level of visual acuity and vision history.
Sometimes this experience results in a real eye opener. Sorry for the pun, yet here is another. Soon it becomes readily apparent that not everyone with diminished vision sees eye to eye. Your intention is to meet people just like you, yet most at this meeting have a menagerie of opinions and issues. Suddenly you’re discovering that the blind and visually impaired community is more diverse than you ever imagined. Certain members start to discuss transportation issues. Others want to banter about employment opportunities or lack thereof. Someone is ranting about a recent episode with Social Security. Another member seems intent on organizing a social activity. One guy has a real vendetta toward DVR. And of course, there is that token Pollyanna expounding on just how wonderful everything is. Finally as the meeting gets marginally organized, the topic of an upcoming conference is mentioned.
While attempting to be civil, you remain patiently seated. The guy to your right has a guide dog, while the lady on the left clings to her white cane. Someone two seats away is busy reading in braille. Another is focusing on the chapter minutes with his magnifying glass. Several individuals don dark glasses, while some young guy showcases what use to be called coke bottle lenses. On the far side of the room is that loud-mouth, whose voice echoes above everyone else’s. Standing behind you is a woman who seems out of place and appears to have no issues at all with visual acuity. Unexpectedly, your feet bump into something furry beneath the table. Hopefully it is just another guide dog belonging to the person seated across from you.
During introductions, vision conditions are voiced, including Macular Degeneration, Retinitis Pigmentosa, Glaucoma, and a number of strange ailments never heard of before. While the majority of members are brief in sharing their stories, a few can’t seem to stop. Unlike many meetings, the facilitator can‘t use the normal body language of discerning stares, frowns, or crossed arms to communicate that it is time to quit the rambling. Being new to this group, you now begin wondering just where to fit in. Truth be told, you may or may not.
One of the most effective tools for dealing with vision loss is sharing your experiences and learning from comrades. When it comes to clubs and organizations, whether local or national, no one group can cater to the vast diversity among blind and visually impaired individuals. There is rarely a perfect fit. When getting involved, you need to know what issues are most important to you and how any particular organization approaches these issues. Just as noteworthy, you have to assess the peers in this group, meaning those with similar educations, training, health, employment, and life experiences. It can be awkward or uncomfortable for example, to be the only one in a group who is either employed or unemployed. The same can be said if most members are older or younger than you. Finally, there is always the reality of relating to others based on their current acuity, when their vision loss occurred, and its progression.
As an alternative, you might need to consider a more specialized organization rather than the major “catch all” associations. Groups like Very Special Arts, Ski for Light, Fishing Has No Boundaries, Art Beyond Sight, Friends In Art, Blindskills, and travel clubs can cater to special interests. Also, don’t overlook the support of groups focused on particular conditions such as Living with Stargardt’s.
As I mentioned before, there are plenty of options out there for ganging up together. Collectively, they can be described by the title of an old western, “The Good, the Bad and the Ugly.” Search around and you will eventually figure out which is which. Be a formidable Goldilocks until you find the one that is just right for you. Expand your horizons by involving yourself in multiple groups. And if nothing seems to fit, create one that does.
Dan Sullivan lives in Wausau, WIsconsin.