Seeing Clearly

I read an article called ‘Seeing Hope’ today.  It opens with a teaser of what life is like for three adolescents; Caroline, Cole and Christian who received an experimental gene therapy called Luxturna, which has been able to correct a specific kind of inherited blindness called LCA - Leber Congenital Amaurosis.   Caroline saw her Mother’s face for the first time, her brother Cole marveled when he first glimpsed the stars over Little Rock and Christian saw the judges faces as he knocked their socks off on America’s Got Talent.  They are incredible stories and I was so happy imagining how those kids and their parents must feel.  I can imagine those feelings all too well, because I spent the first two years of my son’s life dreaming one singular dream for him – that one day he would be able to see.

My son was diagnosed with ROP – Retinopathy of Prematurity the day he turned 5 months old.  The doctor who told me that my son would eventually go blind had tears in her eyes and hugged me when she saw the tears spilling out of mine.  In this blog, I chronicle the voyage I had to take to get beyond the darkness.  However, by the time my son was two years old, I had educated myself enough to see the light that manifested itself in my incredible little boy. That light is the only thing my son has ever known because I realized early on that my child was going to be just fine in a world he’s never seen.  My son had shattered every preconceived notion I had about disabled people before he even realized he was different.

From the moment my boy could understand the words that were coming out of my mouth, he has known that his eyes are broken.  He understands that he lacks ‘a primal sense’ that most other people posses.   You know what?  He’s ok with it.  Better than ok actually, he gets better grades than most of his sighted 5^th grade peers, has a memory like a steel trap (more for video game cheat codes than when his homework assignments are due) and what they call an ‘absolute ear’ for music.  I look at my son and I feel such ridiculous pride over all his accomplishments.  My heart leaps when I look at how well he’s doing compared to what I thought his life would be like the day I got his diagnosis.  He doesn’t really know that though because, for him, he’s not living a life of disability...he’s just living a life that he can’t see with his eyes.

It has been a long time since I wished for sight for my son.  His eyes are broken beyond the help of any gene therapy.  He was born with a trifecta of eye issues and now wears prosthetic lenses in both eyes so my interest in the article wasn’t personal; like every other parent in my online support group I’ve become an armchair ophthalmologist, so I keep up with the news.

The thrill I felt for the children with C names ‘Seeing Hope’ introduced me to was quickly replaced with another feeling.  Disappointment that began to smolder into indignation and finally burned into anger because of the disparaging way the author portrays the life of blind people.  It seems to me that she thinks the blind can’t be mainstreamed in school, find gainful employment or stand a chance of leading rich, independent lives.  She might not say it directly but that sentiment oozes through ever word and my first thought was: what would my son think should he ever stumble upon those careless words. 

I’d like to think that the child I’m raising would laugh about it and that his only comment would be; ‘How did that kid make it to 13 years old and not realize that rain falls from the sky?’ but I hope he never reads it.  In the world I’ve forged for my son it doesn’t matter that he’s blind and I’d hate for him to be slapped in the face with the harsh realization that there are people in the world who view his life with such hopeless expectations.

Lucy Sirianni is an advocate for people with disabilities.  She’s an amazing young woman, who happens to be blind herself.  She’s an inspiration to so many other people - not because she does what she does while blind, mind you - but because she does what she does with wisdom, grace and poise.  Here is her response to ‘Seeing Blind’:

On Sunday as I was headed to grab a latte from my favorite neighborhood coffee shop, enjoying the crisp fall air and the brief break from work, a young woman ran up behind me and asked me breathlessly if she could "pray for my eyes." 

On Tuesday as I sat in the back of a Lyft thinking over a particularly challenging moment in the dissertation chapter I'm writing, my driver asked abruptly, "isn't there some sort of surgery--for your eyes? 

Today, the FDA is considering approving a new treatment for which some people with my eye condition would be eligible. This is not a bad thing in itself, but it has spawned a host of appallingly ableist postings and articles--articles with nauseating headlines about "seeing hope" that only get worse from there, suggesting that those of us who are blind lack independence, are unlikely to succeed in mainstream school or employment, and (direct quote) "have nothing." 

Blindness certainly comes with its challenges, but it's not something I view as a problem. Being viewed as broken, less-than, limited? Not being allowed to go out in public or scroll through my Facebook newsfeed without being reminded that this is how most others see me, and constantly feeling forced to put my life on hold to assert my worth and abilities? That's where the problem lies. Please: stop doing this. Stop assuming those of us who are blind view ourselves as broken and want to be fixed. Stop assuming our lives are Bleak and tragic. Stop sharing articles that perpetuate these harmful misconceptions; the content may be interesting, but the presentation is intensely damaging in countless tangible ways. 

If you really want to support us, understand that ableism exists. Acknowledge that it's pervasive and insidious and that (like most "isms" in our society) it's something that's instilled into all of us and that we have to work consciously against in others and even in ourselves. Then start doing that work. Some blind people would seek out a change in their eyesight if given the chance; some, myself included, have no interest. Some will be eligible for any treatments that become available; others won't. In short, gene therapy is a fine thing, and I'm happy that my friends who would like to pursue this option will likely have the choice to do so in the not-too-distant future, but genetic treatments will benefit only a relatively small number of blind people. Creating a less ableist, more informed and accepting world will benefit us all.

~Lucy Sirianni

I’m quoting Lucy because she managed to eloquently convey thoughts that I probably couldn’t have expressed without dropping several f-bombs and possibly taking a cheap shot at the author’s writing style, and that would have cheapened the overall quality of this response.  

I will say one thing with unconfirmed certainty, ‘Seeing Hope’ was not written by someone who has any practical experience with blind people.  She seems to be sadly deluded, feeling sorry for people with disabilities and probably imagines blind people living sad little lives, quietly cashing their disability checks and wishing with all their hearts for eyes that can see.  Perhaps there are some blind folks out there that live like that, but none that I know.  If there are and they've been blind since childhood,* I imagine that they were raised by parents who spent their lives wishing for a cure for blindness and lamenting their fate instead of taking blindness as nothing more than a stumbling block along the way.

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 mother of this amazing child who, frankly, wouldn't be the person he is if he could see.  

Here’s my sincere hope that the authors of articles like ‘Seeing Hope’ will take a little more care with their words in the future.  My son’s blindness is not a disease that needs a cure; the ignorance that leads people to believe it is – that’s the problem.



*Being blinded as an adult is quite different from having vision loss since birth and much more difficult to manage.  My statement was not designed to disparage anyone who might be struggling with their condition, please reach out for help if you need it.