Friday, January 20, 2017

Oh Rachael Ray

Perusing Facebook today, I came across this article and corresponding video from the Rachael Ray Show that features Stargardt’s Disease, the form of early-onset macular degeneration that I experience. This article, titled Blind Man Has Never Seen His Wife—When He Sees Her for the 1st Time, He Has Just 2 Words, covers the story of Gene, a person with Stargardt’s Disease, “seeing” his wife, Joy, using a new form of assistive technology. This technology, eSight, uses a high definition video camera to enlarge what is in the environment on to screens that are worn like glasses.
Previously, the show brought on a woman with Stargardt’s Disease to help her “see for the first time” using eSight. Joy, the wife of Gene, a person with Stargardt’s Disease, saw the original segment and wrote Rachael Ray to share her desperate desire to have the same experience with her husband. The couple was invited to appear on the show with their son, Lincoln.

Although I am grateful for both increased media coverage of disability and for the countless ways technology aids people with disabilities, several features of this deeply dishearten me.

First, I am bothered by the gross misrepresentation of Stargardt’s Disease. The article opens by asking readers to “imagine being married to a woman whose face you’ve never seen. Or being called “daddy” by your son, and not knowing what he looks like. Imagine living every day without the blessing of sight—something that most of us take for granted without even realizing it.” Obviously, this opening aims to pull on readers heartstrings. Unfortunately, this portrayal distorts and stigmatizes Stargardt’s Disease.

Describing someone with Stargardt’s as blind and incapable of seeing is inaccurate. Most people with Stargardt’s Disease have vision loss that progresses to a point that they are  considered legally blind, characterized by vision below 20/200. However, people with Stargardt’s still have usable vision. Ironically, Rachael Ray and fellow commentators describe Gene as blind while simultaneously showing him reading text, albeit with the aid of assistive technology. If Gene were fully blind, he could not read text. To say people with Stargardt’s cannot see is false. People with Stargardt’s cannot see as well as someone who is normally sighted.

This video and accompanying article say that “although Gene was born with the condition, he wasn’t formally diagnosed until he was 16.” The typical trajectory of Stargardt’s Disease is such that most people are diagnosed during their teenage years. This means Gene likely had correctable vision, seeing as a normally sighted person would until he was a teen. Stating Gene has never seen is false.

By failing to portray the variability in the experience of blindness, this depiction of Stargardt’s Disease continues to propagate ignorance about vision loss. Vision loss is diverse. People who are completely blind are often offended by portraying all forms of vision loss as total blindness. Those with less severe forms of vision loss navigate the world very differently than those with total blindness. Furthermore, disability is not always permanent or stagnant. Stargardt’s Disease is progressive and changes over the lifespan. Thus, portraying Gene as blind since birth is untrue. Just as we should never assume that all Chinese Americans share the same culture, all members of the Jewish faith celebrate the same traditions, or all elderly people experience memory loss, we should not portray all persons with a visual disability as being totally blind since birth.

Although I believe Rachael Ray had the best of intentions when doing these two segments, her portrayal of disabilities was inherently ablest.  Like so many often do, Rachael Ray succumbs to inspiration porn by making remarks like, “You have not let this limit you or bum you out, you are cooking and kicking her butt in the kitchen…. I just love that about you, such a great human being.” Responses like these presume that people with vision loss should be bummed out, as if it requires incredible human strength to continue living despite a disability. Having a disability creates additional stress, undeniably, but learning how to accommodate and cook while having a disability does not make one a “great human being.”

After Gene puts on the eSight glasses, Rachael Ray says, “Now you have to meet your son!” This statement suggests that you cannot really “meet” someone unless you physically see them with corrected vision. This statement invalidates the ways in which the visually impaired perceive the world and presumes that there is only one way to “meet” someone: by seeing them. Additionally, this is almost comical given the way this technology enables sight in the first place. Gene is able to see using glasses that use a digital camera to enlarge and stabilize images. In other words, Gene is “meeting” his son by seeing his face enlarged on a digital screen.  Personally, I believe using the word “meet” discounts the relationship they have already built; as if time spent holding his baby boy, changing his diaper, and playing together is less valuable than the opportunity to see a zoomed in version of his son’s face. Preposterous.

As a future psychologist, I feel as though I must also highlight the inappropriate message Rachael Ray sends when she repeatedly instructs the wife in this segment “Joy, don’t cry you look so gorgeous!” Not to sound too much like a therapist, but Joy should be permitted to feel her feelings. I am disturbed by the suggestion that maintaining appearances is more important than emotional connection.

Initially, when I saw this article and corresponding video, I was elated to see Stargardt’s featured. Upon reading and viewing the contents, I feel saddened by the missed opportunity to accurately portray Stargardt’s. This is yet another unfortunate example of local news and talk show hosts depicting disability without sensitivity.

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