We’re misreading millions of blind Americans

We’re misreading millions of blind Americans
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My two sons were born with Leber’s congenital amaurosis (LCA), a rare genetic, degenerative retinal disease that stole their vision before they had eyes to see. Today, as they excel on sports fields and in the classroom — unknowingly confounding the low expectations that society has for the blind — I am grateful for the support system our family has had to help navigate the many obstacles on their path to adulthood.

But I was one of the lucky moms. I was able to leave a lucrative career and sacrifice nearly $1 million in wages to devote myself to learning, alongside my boys, how to live a flourishing life without sight. 

Things like how to look at someone when they talk to you to navigating a playground or how to escape from a building in case of fire, were immensely challenging and could not have been achieved without the thousands of hours spent working with early intervention and preschool teachers of the visually impaired.

All this before the boys reached school age. Now, as they near the end of high school, the cost of special teachers, support staff, and adapted equipment is nearing half a million dollars. Without access to this incredible support system, none of their academic or social success would have been possible. Again, I was one of the lucky moms. 

But luck should have nothing to do with it. With the majority of the blind community in the United States not as fortunate, it’s time that Congress, the Food and Drug Administration and leaders across the private sector recognize long-standing misguided stereotypes and embrace tangible solutions to help families seeking educational and care options.

Of the millions Americans who considered blind or visually impaired, approximately 70 percent are unemployed, only 15 percent complete a bachelor’s degree or higher, and a shocking 29 percent live below the poverty line.

This has nothing to do with career options, but everything to do with the fact that people think the blind can’t do the work. As a parent, I am fearful that even after my guys graduate college, they are still at the mercy of employers who may be risk-averse to hiring someone who they wrongly perceive to have a disability. 

So, on the heels of Blindness Awareness Month, I want to urge all of us, but especially lawmakers and the broader health care community, to support three action items that will have an immediate, positive impact on the blind community.

First, we need to change the way we approach the so-called problem of blindness. When I learned my sons would lack the same sight-abilities as their playmates, I lamented their “handicap.” But, as time went by, the most marvelous thing happened. 

They, through their success, confidence, and creativity, taught me that I was the one with the handicap. By subconsciously considering them as somehow challenged or different, I was setting them up for a less robust life than they deserved.

An immediate opportunity to ensure that we’re providing all necessary resources to blind students is passage of the bipartisan Cogswell-Macy Act. Among its provisions, the bill increases available resources for early education environments, promotes accountability on the state and federal levels, and establishes a national center to help train instructors and share best practices.

Second, we must make genetic testing routine. Both for couples planning to conceive and for patients who have been diagnosed with an IRD. I learned only after the birth of our first son that his Dad and I were carriers of LCA. For those living with an IRD, knowing your genetic mutation opens the door to more options, including participation in clinical trials and potentially future treatment options.

Finally, we need to bolster research and development of treatment options. We live in a time of tremendous scientific advancement, especially with respect to treating otherwise incurable eye diseases. Recently, an advisory committee to the Food and Drug Administration recommended approval of a one-time gene therapy that can restore vision for individuals with a specific type of inherited retinal disease.

The cost of developing this and other treatments is very high. But the gift of treatment is something one cannot price so easily, particularly given the financial burden on patients and families, and really society, over time. I remain hopeful an open conversation on the cost-value debate will happen soon, so our friends and family members can gain access to a treatment they so deserve.

Our blind family — politicians, music superstars, scientists, engineers, and mountaineers — are like you or me, only more so. That is, without the prejudices, the judge-a-book-by-its-cover mentality we apply to everything that comes within our purview.

They “see” brilliantly in their mind’s eye, things for what they are, not what they seem. If we could adopt this special kind of lens to when it comes to assisting this amazing community, much work could be accomplished.

Kristin Smedley is the president and co-founder of the Curing Retinal Blindness Foundation.