Rethinking the Word "Blind"
Friday, April 08, 2016
The word blind has become increasingly less associated with age-related macular degeneration (AMD), thanks in part to more than 5 years of Herculean awareness efforts by a Macular Degeneration Support organization called MD Support, and the conscientiousness of other leading organizations around the world.
Dan Roberts, the ever-giving and tireless director of MD Support, Inc. and author of The First Year: Age-Related Macular Degeneration developed an ambitious grass roots campaign in 2007 to get the press and some doctors to stop referring to AMD as the "leading cause of blindness among senior citizens".
The good news is that it worked, but the misused phrase continues to pop up in the press way too often, usually by uninformed writers and too many doctors who still use the term blind, when they mean legally blind, which more often than not, suggests visual impairment—not total blindness.
"It's not that blind is a bad word." said Dan. "It's just that it doesn't apply to people with AMD, who are more accurately described as having vision loss, low vision or visual impairment. We encourage AMD patients to learn blindness skills to help compensate for loss of central vision, but we also emphasize the importance of maximizing and enjoying vision that will never be taken away by the disease. Telling a patient he or she will go blind from AMD often leads to serious depression and even suicide.
"The World Health Organization estimates that many of the 850,000 suicides each year can be attributed to depression. I can't help but think how many of those lives could be saved with more accurate healthcare information and support."
Dan, who is visually-impaired himself with AMD, spent months tracking virtually every public article and news broadcast about macular degeneration appearing on the Internet. As of November 10, 2006, he had found that 58 percent were still using the word blind as a description of AMD. As of March 10, 2007, he reported that the ratio had dropped to 42 percent, and the trend continued downward. This was good news for the large majority of AMD patients, who, according to an MD Support poll do not think of themselves as blind and do not want the term to be used to describe their visual condition.
Dan believes from personal experience that a person who thinks blindness is imminent will not be as likely to seek proper treatment and low vision rehabilitation that could greatly improve quality of life. The mission of MDSupport.org is to ensure that all patients are aware of the help available to them and that AMD is not the end of the road. This mission is carried out through the organization's 800-page website and the International MD Support Group knows as the International Low Vision Support Group (ILVSG).
He produces free monthly presentations for ILVSG featuring experts on every aspect of treating and living with central vision loss. The past recordings of these presentations are available for groups and individuals, including a number of nutrition science public service presentations.
Dan Roberts and MD Support also lead the world of high-tech with specially-designed indoor way-finding technology now being used at state and national blind and low vision conventions. You can learn more about MDSupport and this app here.
Here is the schedule link to ILVSG presentations.
Ellen Troyer, with Spencer Thornton, MD, and the Biosyntrx staff
If you are attending the upcoming American Society of Cataract and Refractive Surgery don't forget to stop by the Biosyntrx booth #1413 to say hello or meet the Biosyntrx team members.
DMEK Descemet Stripping Forceps 2-285