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.

Monday, January 16, 2017

Sharing some great spotlights on ableism

Hi friends,

Today, I offer a few pieces I've come across lately that address the intersection of ableism and identity.

First, this is a humorous and all-too-real video on ableism by comedian Dylan Maron. I've been sharing this with friends who are less on board the social justice train to introduce the consequences of ableism.

Second, this is a vulnerable, powerful, and amusing share about what goes into dating blind.

Third, a fellow The Mighty contributor wrote this wonderful piece sharing her reaction to Meryl Streep's speech at the Golden Globes last week. If you haven't seen Streep's passionate acceptance speech, in which she shares her thoughts about Trump's mockery of a reporter with a disability, I encourage you to watch that here.

And finally, here's an article about the portrayal of inspiration porn on the show, Speechless.

Thank you fellow writers, comedians, artists, and more who have chosen to highlight ableism.

Wednesday, January 11, 2017

Explaining Academic Theory with Characters: The Tropes of Disability

Theories in disability studies posit several approaches to disability (brief and informative definitions of models including medical, moral, and social models can be found here). Emily K. Michael, a fellow blind academic, developed these ideas into three specific characters in her fantastic TEDX talk.

I was struck by the humanity Emily introduces by defining these academic theories using characters. Before explaining further, I offer a summary of Emily’s tropes, with some expansion of my own. The three tropes Emily identifies are the victim, the superhero, and the unspeakable. The victim believes disability will forever ruin their life, changing their life for the worse. “It is so unfair; every aspect of life is harder – and often impossible - because of my disability.” The victim is the persona generally expected from the able-bodied, because without experiencing disability, the able-bodied often imagine disability to be excruciating. On the other extreme, the superhero believes they are not a victim, does not want pity, and thinks they can tackle anything. “It’s not hard at all, I have all the accommodations I could ever need and can navigate the world just as anyone else can.” The superhero desperately wants others to believe they can accomplish everything they want to perfectly and seamlessly, evading the vulnerability of admitting what they can and cannot do.   The unspeakable denies the role of disability, trying to hide the experience. The unspeakable does not share stories about their disability, accommodations they use, or ask for help. Often the unspeakable confabulates, blaming their social faux pas or symptoms on something else entirely.   

I felt a strong connection to these tropes because I am these tropes. I embody each of these personas at different times.

The Victim: At age 18, my vision loss made it no longer safe to drive. I vividly recall when I realized I would soon have to relinquish my car, my chariot to teenage freedom. I had spent 12 hours at a debate competition, arguing the pros and cons of harsher punishments for hate crimes. My eyes were exhausted; bleary from squinting at scribbles under florescent lighting. When I walked outside, I waited for my eyes to adjust to the darkness and for my vision to focus. I waited, but my eyes did not adjust, my vision did not refocus. I felt a rush of panic; I couldn’t possibly drive. My eyes darted between my teammates. I pulled one aside and whispered, “Hey, do you mind driving? My eyes are really tired and I don’t think it’s safe.” He obliged. I spent the car ride scanning the environment, noticing what I could and could not see. Should I be able to read that sign? Do those lights look haloed to everyone? My body sank into the seat, feeling heavy with the weight of my dependence on others. Over the following few weeks, my vision loss progressed, I handed over my keys. I coordinated every social gathering, errand, and appointment with a pool of drivers, my dear supportive family and friends. At the time, I felt that my autonomy was being unfairly stripped away. I believed everything would be harder being unable to drive. I pitied myself, and thought the world was unfair.

The Superhero: At my first job after college, I yearned to convince my employers that I could do anything any sighted person could do. One of my first tasks was to set up a database and enter patient data. To my colleagues, the challenging aspect of this task was configuring the extensive database, comprised of hundreds of tables with thousands of fields. Although it was indeed cumbersome to learn to use unfamiliar software, I found it rewarding to develop new database management skills. To me, the challenging, and miserable, aspect of this task was squinting and magnifying each individual response to enter into data tables. Standard-print paper data entry is not a good task for a visually impaired person. My eyes fatigued often, giving me headaches. I needed to take frequent breaks.  I could only perform the task in certain spaces with appropriate lighting. But no one around me knew any of that, because I wanted them to see me as diligent, conscientious, and capable. I never complained, no matter if a task took me longer, gave me headaches, or was not done as well due to my vision loss. I developed a pattern of accommodating myself, ensuring my colleagues never saw me struggle. I denied any potential for my vision loss to impact my work or me.

The Unspeakable: For the first few years of my relationship with my boyfriend, I intentionally failed to mention anything about my vision to his parents. It was pretty easy to hide. We often went out to eat at Chinese restaurants where his family orders (in Mandarin) several dishes to share family style, so I never needed to magnify a menu. Because most foods weren’t easily identifiable, someone would describe the contents of each dish, so I didn’t need to see for myself, or ask for clarification. I struggled to serve myself from the platters, but I easily blamed chopstick clumsiness, which signaled my boyfriend to help. I preferred to silence that part of me to avoid undesirable reactions. On some level, I assumed my boyfriend informed them about my vision loss and perhaps disclosed the effects it has on our relationship. And yet, I never brought it up. I was always afraid that they would see me as broken or resent the ways in which I require assistance from their son.

I hypothesize most people with disabilities, like me, see themselves as the victim, the superhero, and the unspeakable. Through my work as a therapist, I’ve been trying to internalize the eternal ampersand (stick with me here, this sentence will make sense soon, I hope). My clinical work is informed by a treatment modality called Dialectical Behavioral Therapy (DBT). In DBT, we emphasize dialectics, or contradictions, like acceptance and change. In these dialectics, we acknowledge the competing poles of accepting ourselves fully and nonjudgmentally, and seeking to change and improve. The idea of dialectics is that, although seemingly opposing, both poles are true. We can both accept ourselves as enough and strive to improve to be better. There are many core dialectics in DBT, and this framework can be applied to various conflicting poles. “The eternal ampersand” represents my desire to notice the “ands.”

In this case, through these tropes, I recognize the eternal ampersand of my disabled identity. Most of the time, I'm just me, a person with low vision, sharing my experience and acknowledging what I can and cannot do. And some of the time, I embody the victim, superhero, and unspeakable. These tropes, functioning as personifications of academic theories, depict the dynamic ways we represent ourselves and our abilities.