ABCNews recently published "Seeing Hope: FDA Panel Considers Gene Therapy for Blindness" intending to excite readers with the story of three siblings whose vision, impaired from Leber Congenital Amaurosis, improved remarkably after undergoing gene therapy.
The author writes of the outcomes of the majority of individuals who have undergone the same gene therapy as the sibling set, "Many are no longer legally blind and gained independence."
"Gained independence"—words that, while well-intentioned and possibly accurate for this group of individuals, could subtly allude to the notion that individuals who are blind aren’t capable of complete independence.
Let’s dispel this misconception.
What I Want the World to Know About Blindness
I want the world to know that people who are blind or visually impaired can be competent, confident, successful, innovative, and hard-working if they so choose, just as the general population. Sure, blindness creates hurdles that require workarounds, which we call accommodations, but that’s it. That’s really it.
It isn’t a sentence to emotional darkness, depression, or unhappiness. It isn’t a sentence to social isolation. It isn’t a sentence to unemployment.
Then what is blindness, if not a sentence? Blindness is a singular trait that indicates life will be navigated differently than if sighted.
Don’t take my word for it. Read the story of John Carty, computer programmer; Charles Catherine, public relations representative; Dawn Wilcox, geriatric nurse; or Denna Lambert, NASA project manager. These are hard-working individuals who are living independently—individuals who happen to be blind.
What One Mom Wants the World to Know About Blindness
One mom, in particular, has a powerful message to add.
In response to the aforementioned article, Stacy Baumann, mother of a son who has Retinopathy of Prematurity, wrote the blog post Seeing Clearly, in which she writes:
We live in a world that’s dramatically changing every day. The technological resources that are available for people with disabilities are equalizing game changers; as are the advances being made in medicine on the genetic level. If this treatment had been a viable choice for my son the day I received his diagnosis all those years ago, I’ll be the first to admit that I would have sold my soul for it because I, like the author of "Seeing Hope," had been so programmed by society to misunderstand the definition of the word disabled. I thought it meant unable. I assumed it defined a life as opposed to being one aspect of it. Though my son might have gained some vision, I would have denied myself my greatest joy in life, being the mother of this amazing child who, frankly, wouldn’t be the person he is if he could see.
Stacy concludes, "My son’s blindness is not a disease that needs a cure…"
What Do You Want the World to Know About Blindness?
What would you add to the conversation?
Blindness is a low incidence disability; if we want the world to know the truth about blindness, we that are familiar with it must speak up.
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