Monday, April 24, 2017
I take my seat in the trendy, dimly lit restaurant, and accept the menu from the waiter. I rummage in my purse, feeling for my phone. I open a magnification app and turn the flashlight on, tweaking the settings for my visual needs. I ask a friend to “orient me” by pointing out the menus headings. I then spend the next several minutes absorbed with the task.
I realize I’ve missed the conversation. I’m the last to decide. Because I am only seeing a couple words at a time, I’ve been forming a mental representation of the menu that I slowly fill in. I try to memorize every item; memorizing is easier than rereading descriptions. I pan back to the most appealing section. I try to “skim,” which for me means deciphering the words most visually identifiable based on font, spacing, and length. I notice the conversation lull.
I ask what others are getting, thinking I may just order the same thing to make this task simpler. Yes, I’ll have what she’s having. I give up on my search, shove my phone in my purse, and re-engage with the group. Determining what to order at a restaurant requires focused attention; not (entirely) because the decision is challenging; the process of reading a menu is cognitively demanding.
It is obvious that low vision makes seeing more difficult. This increased difficulty means using sight requires more attentional resources. The process of magnifying, scanning, spatially orienting, and memorizing is more cognitively demanding, and affects tasks relying on sight including reading a menu, reviewing mail, filling out paperwork, or checking an event in my calendar. By requiring additional attention and effort, these seemingly simple tasks can distract me from what is happening around me.
Everyone becomes inattentive when cognitive resources are allocated to another task. This experience is referred to as inattentional blindness, a psychological term used to describe the phenomena of not perceiving something in sight due to lack of attention, and not lack of vision. Inattentional blindness is often the source of lay psychology experiments; see a great example here (https://www.youtube.com/watch?v=vJG698U2Mvo).
In recent years, I’ve felt plagued by the propensity of my actual blindness to exacerbate inattentional blindness. Millennials are notorious for multitasking; texting, snapping, posting, tweeting, and more while simultaneously out with friends, in class, or on vacation. I counteract this stereotype; I cannot casually respond to a facebook post at dinner. I would have to turn up my brightness, not-so-subtly hold my phone 3 inches from my face, double-check word by word for typos, and inevitably miss almost ten minutes of conversation. As a result, I have often envied others’ engagement with their smart phones, ability to read news articles in class, and facility to use multiple windows at once on their computers.
I share this not to invoke pity or sympathy for the additional attentional resources required of low vision. I certainly do not wish to sound ungrateful for the countless ways adaptive technology improves my daily experience. Instead, I wish to offer a positive reframing from which I continue to learn. My inattentional blindness forces mindfulness. Because the pitfalls of multitasking are more pronounced for me, I cannot feasibly spend time perusing social media, responding to emails, or reading the news when I am attending to something else.
Instead, I deliberately allocate the limited attentional resources I have. I just returned from a long walk at the lake with my dog. I spent 20 minutes catching up with family on the phone. I spent 10 minutes listening to a podcast. I spent the remaining 30 minutes appreciating the mountains, hearing the birds, and smelling the harbingers of rain. I still enjoy my own form of multitasking at times, yet, most attempts are frankly too attentionally demanding. My attention is better allocated elsewhere.
Thursday, April 13, 2017
Two weeks after running my second half marathon, I've found myself recently absorbed in the media coverage of blind and visually impaired runners in the upcoming Boston marathon. I wanted to share this link because it provides a thoughtful depiction of these athletes. Unlike the countless stories characterized as "inspiration porn," this piece commemorates these athletes' strength and tenacity, which is deserved by any athlete of this caliber. I take this opportunity to promote these powerful runners, as well as this depiction of them!
Saturday, March 25, 2017
I groggily came across this video this morning and was struck by this woman’s unabashed approach to parenting as a blind single mother. I’ll reserve a longer conversation about parenting with disabilities for another post; for now, I’d like to highlight the difficulty, and beauty, of confidence in adaptation.
Yesterday, while waiting with my research team to give a high-pressure presentation, a fellow presenter sat next to me. Within seconds, he pointed to my cane, glared into my eyes, and asked, “I’m confused. What’s that? Why do you have that?”
Accustomed to this reaction, I immediately responded, “I’m visually impaired and this is my cane.” He glanced from my eyes to the cane, then resumed eye contact with a questioning scowl.
“I never would have known,” he replied.
I refrain from speaking aloud my automatic thoughts, “I always know. You want to know how I always know? This world was built for the sighted, and I was reminded of my low vision at every visual obstacle on my way here. From finding the building, to pushing the right button in the elevator, and yes, to finding this empty chair. You may not have known, but I always do.”
Navigating with a cane elicits unwanted commentary and uncomfortable conversations. As an admittedly overly self conscious person, I often question whether to use my cane not only on the basis of what will serve me best in the moment. I consider how those around me will view me, and whether I want to send the signal of my blindness to that particular community.
I share this truth with embarrassment; as an advocate for inclusion, I believe firmly that we all deserve to be authentically and genuinely ourselves in every moment, even when that means displaying an identity less accepted. It is with this residual shame that I find such inspiration in this video (click here for link; screenshots below). The woman featured here states, “I call it my pimp stick, it’s boring to just say a cane.”
First, although I generally do not promote the use of “pimp” in most social circles, I simply adore the reframing. I immediately head 50 cent cheering “I don't know what you heard about me / But a bitch can't get a dollar out of me / No Cadillac, no perms, you can't see / That I'm a motherfucking P-I-M-P.” Again, not promoting the use of “bitch,” and “pimp,” but at the same time, I respect the association of a long white cane with the definition of pimp meaning to make more showy or impressive. This word choice suggests that for her, the use of a cane signals how she is a badass. And let’s be honest, this woman exudes badass.
Second, this woman repeatedly displays her shameless acceptance of adaptation. Although I have not experienced the wrath of judgments tied to parenting, I have heard from my parenting friends how intense it can be. The dirty looks and nasty comments that ensue from pregnant women drinking coffee or traveling parents being unable to soothe a crying infant; the judgments can seem endless. It takes strength and courage for this mom to embrace “feeding time is a mess, and I just accept that it’s going to be a mess.” At least in this clip, this woman non-judgmentally speaks her truth and interacts with the world as it suits her needs. She pulls her stroller behind her, defying norms and not seeming phased by others’ reactions.
As I shared in my experience just yesterday, I find it challenging to maintain confidence and self-assuredness when using adaptations that elicit strong social reactions. Rather than seeing my cane as a signal of how I’m different or less able, I hope to instead frame my cane as a motherfucking P-I-M-P stick.
Saturday, February 18, 2017
I had a realization recently that has helped me reaffirm the strength of disability. As much as I feel confident navigating the world as a disabled person, I also occasionally question the evolutionary forces on disability.
Natural selection assumes survival of the fittest; only the most able survive. Inherently, this means people with disabilities are less fit for the environment.
When I reflect on the challenges of living with a disability, I feel gratitude for the civil rights and technological advancements that I rely on so heavily. At the same time, I often consider the increased difficulties I would have faced in a different error. If I were born one hundred, one thousand, or even ten thousand years earlier, I would have been stifled by the environment – killed by a bear or deemed an invalid by society.
This train of thought has often led me to a dark conclusion: evolution is based on survival of the fittest. I am not the fittest. I have to rely on others to survive.
But what does it mean to be “the fittest,” anyway? The natural answer would be that the fittest are the strongest, healthiest, smartest, most sociable, and most able to meet the demands of the environment. This last piece – meeting the demands of the environment – is especially important. Regardless of the task, I would always prefer to assign it to someone who has persisted in the face of difficulty, flexibly and creatively adapted, and developed novel strategies to best suit their strengths and abilities.
And here comes my empowering realization: those who strive in the face of adversity are the fittest.
People with disabilities develop creative strategies to adapt to their environment. I listen to books rather than read them. I use bump dots to feel buttons on the microwave. I test and tweak and repeat until I come up with workable solutions to my changing vision. Because my needs, vision, and technology are always changing, this process will continue indefinitely.
Survival of the fittest means those who are able to best navigate their environment are the most likely to succeed. Those who have encountered adversity – in the form of disability or otherwise – have had to adaptively learn to fit the needs of the environment. The innovation, resilience, and tenacity required to flourish despite barriers indicate that we are the fittest.
So, if only the fittest survive, I no longer worry if I’ll make the cut.
Friday, January 20, 2017
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.