"I’M SORRY..."

In the past couple of weeks, we have been placed in situations where we have had to explain Santiago’s condition to individuals who don’t know he is blind, strangers mostly. Some of these interactions and even some responses from people who know he is blind force me to ask the following: Why are we, as a collective society, so scared of blindness?

When the American Foundation for the Blind conducted a survey over a decade ago, the majority of respondents indicated that they believe strongly that losing one’s sight would have the most negative impact on their quality of life. In essence, being blind is more negative than HIV/AIDS, cancer, stroke, and heart disease. Blindness is the only one of these five conditions that is not life-threatening, yet, research reveals that we would rather grapple with something that could kill us than lose our sight. We are that visually driven. We are also seldom exposed to blindness given its rarity; therefore, we might have incorrect assumptions about it. I certainly did.

In this context, I now am little more gracious with myself and others. Out of fear, uncertainty, and self-doubt, we often don’t know what to say when something is unexpected or “different.” Comments have ranged from “I’m so sorry” to “I am heartbroken” to “I’m sorry I asked” to “Y’all better stay healthy and live a long time,” indicating that he will not be able to make it on his own. It is important to recognize that the majority of people have responded positively—sometimes even with humor. Humor is not only okay but helpful. Humor can, although not always, normalize the exchange. Nonetheless, for those who feel sorry that he was born without eyes, I think it is worthwhile to explore why “I’m sorry”—or some iteration thereof— is an understandable but still unnecessary response.

I think the “I’m sorry” stems out of the fear that blind people don’t have freedom; they lack independence; they can’t see the natural beauty of the world; they don’t hold traditional jobs; they don’t…; they can’t…; they must not…. There are myriad assumptions about what blind children and adults might not be able to do or see. I made them myself. Rarely do we ask the question what can they do and even see? In the short ten weeks since we had Santiago, we now know that blind people do just about everything their sighted counterparts do. They run marathons with guide dogs; they are computer programmers, top graduates of Harvard law school, doctors, teachers, engineers, YouTubers. You name it, they do it. But, we sometimes assume they can’t, triggering a response of condolence. It is a natural reaction to the uncertain; however, without even knowing it and even thinking we are being supportive, we have made a blind individual somehow less capable with a simple, “I’m sorry.”

When people say “I’m sorry” after you have a baby, it feels really strange. “I’m sorry” or something like it are usually reserved responses for those who have just lost someone, or something terrible has happened, or they are going to miss out on something. When someone’s parent dies: “I’m so sorry for your loss.” When someone is going through a hard divorce: “I’m so sorry you are in the thick of something difficult.” When we won’t be able to attend an event: “I’m sorry I can’t be there.” But a new baby? How odd, right? I slightly understood the sentiment when Santiago was born. I too was in shock and felt sad for myself and him on more than one occasion. The news meant that what we envisioned (pun intended) for our family was now different. Having a blind child is not what we expected, and in this sense, “I’m sorry” made sense—almost. But these responses, including my own, didn’t bother me any less. In fact, they make me incredibly uncomfortable because “I’m sorry” infers there is something about which to be sorry. Using this logic, the question remains: Do we need to be sorry he is blind?

Absolutely not. We want to send to him messages of encouragement, frequently communicating “go make your life happen” and “with God’s help, you can be and do anything you want regardless of your disability.” Okay, he probably won’t an Uber driver or a pilot, but you get the drift. These messages are hard to convey under the cloud of “I’m sorry.”

I don’t mean to come across as defensive. I acknowledge when people say “I am sorry” they are saying it to us and for us as parents of a blind child, dealing with the unexpected. Perhaps they mean, “I am sorry … that this is not what you ‘planned.’” Or, “I’m sorry… if this is going to be ‘hard.’” It is an expression to fill space—when we don’t know what else to say or do. It is an expression that communicates just how little we as a society know about blindness and disabilities in general and how very uncomfortable we are with both. We want to believe we are open-minded, accepting of all that is “different.” But, “different” evokes a response that is too often not one of inclusion. Different subversively communicates that something is not right with the natural order, that something should be changed.

Rather than expressions that imply we should want to change something about our son, we hope people ask questions—a lot of questions. How are y’all feeling? What are the next steps? What have you learned so far? What are areas you and he will need the most support? Even, what are those things in his eyes? (They are conformers by the way.) Questions allow for learning. Questions suggest a desire to understand, to relate, to include. Santiago doesn’t need our apologies, our condolences, our broken hearts. He needs our rallying cries of support, love, and encouragement. After all, don’t we all?