Monday, June 19, 2017
A few weeks ago, one of my officemates asked me to help her word an email. She pointed to her screen and asked if she was getting her point across. I responded, “oh please, you know there’s no way I can see that!” She read the questionable wording out loud, and I provided my feedback.
She then chimed in, “isn’t it a compliment I always forget about your vision loss?” I paused, choosing my words carefully, and shared that although it is flattering that she does not see me as defined by my disability, my vision loss is a core piece of my identity that impacts how I live my life. My vision loss is so central to my daily experience; it seems unfathomable that it is easily and frequently forgotten.
Many friends and family members have shared how unnoticeable my vision loss is to them. This is said wholeheartedly as a compliment. Although I recognize the good intentions, I no longer view this as a compliment. Candidly, I find it offensive. Let me explain.
I haven’t always felt this way. A few years ago, I would have enthusiastically responded “it is a huge compliment that you don’t see me as disabled!” I never aspired for my vision loss to become a part of my identity. Passing as sighted was a badge of honor.
Still, I continue to be sensitive to the ways in which my vision loss is apparent. I feel self-conscious when I spill, make jokes when I run into things, and try desperately to make it appear as if I’m making eye contact, even if I can’t see your face. Embedded in these lingering insecurities, there is a piece of me that is flattered when you say this is unnoticed. In that moment, I feel like perhaps I’m not that different; perhaps I can pass as sighted.
At the same time, I am, and will likely always be, disabled. I strive to be transparent about my vision loss, which requires me to put my shame aside, ask for help when I need it, and avoid minimizing the consequences of low vision. Confidence and comfort in my body’s abilities requires me to move past the brief glory of passing as sighted. It isn’t glorious to pretend to be someone I’m not, and it isn’t a compliment that you see me as someone I’m not. I am enough, even if I spill and run into things and cannot make eye contact. When you tell me that it’s a compliment that you don’t notice or remember these aspects of me, I receive the message that it is not flattering to appear disabled.
I challenge the notion that passing as able-bodied is flattering. I want it to be flattering to recognize the diverse spectrum of human ability. Maybe one day, I’ll be afforded the compliment, “I could never forget your disability because it is a core part of your identity. It would be like forgetting your name, race, or gender. Your difference in ability makes you who you are, and I will forever notice you.”
Wednesday, May 24, 2017
Thursday, May 18, 2017
During our final session together, one of my therapy clients asked if she could give me some feedback. I welcomed her perspective, though internally I felt cautious. She shared an observation: I always apologize when my vision loss enters the room. She brought up several examples, such as when I get out a magnifier to read her weekly homework. She candidly poked, “I find it quite ironic that we focus on radical acceptance of oneself and the importance of asserting needs for interpersonal effectiveness and YOU’RE the one constantly apologizing for an unchanging fact of life that you have no control over.”
Unbeknownst to my client, she served as my therapist today. I hadn’t realized I apologized for when and how I use assistive technology in the therapy room. I often feel embarrassed about and apologize for myriad facets of my vision loss: zooming in and out when I share my screen, providing the inappropriate order of content during a presentation because I cannot see the presentation or my notes, engaging in various social faux pas ranging clumsiness (spilling, dropping, tripping). I had, erroneously, believed apologizing was the appropriate response given the inconvenience I was creating for those around me.
Before elaborating on the ties between apologizing and shame, I need to distinguish the type of apologizing to which I’m referring. I am referring to the tendency to apologize to communicate embarrassment. I am not referring to the tendency to apologize to communicate comedic self-deprecation. I believe the latter, humor, is instrumental in reducing the tension of an otherwise challenging situation. For example, when a friend asks if she has spinach in her teeth, I’ll retort in jest, “Ha, sorry, Blindy is absolutely NOT the one to ask about that.” The former, embarrassment, however, denotes a broader narrative riddled with self-doubt. For example, when I can’t find a location where I’m meeting a friend, I’ll text or call saying “I’m really sorry, I'm failing miserably and can’t find my way there.”
Apologizing for how I see – or do not see - signals my continued battle with shame. As a researcher of emotions and as a clinician, I am often in the position of explaining the utility of shame and other self-conscious emotions (e.g. embarrassment, pride, and guilt). Shame, like any emotion, motivates and guides behavior. Shame serves a prominent function in social relationships and is a common response to doing something that signals not being enough, such as failing to meet expectations or encountering rejection or criticism. In these situations, shame teaches us to avoid the behavior that elicited the unpleasant reaction. The desire to avoid shame can prompt us to engage in socially and personally desirable behaviors. And at the same time, feelings of shame can lead to a pervasive sense of self-blame.
Although I genuinely feel confident about my strength and capabilities, my behavior of apologizing whenever my vision loss impacts those around me is indicative of lingering shame. And, not only does this behavior reflect my underlying emotions about myself as someone who is visually impaired, it communicates to others that I am not enough, that I am broken, and that I need to apologize for who I am and how I navigate the world. Apologizing denotes responsibility; I m not responsible for my vision loss, nor am I responsible for others responses to my vision loss and its repercussions.
When my client shared this feedback, I took the opportunity to self-disclose and normalize: I, like everyone, have work to do on my thoughts, emotions, and behaviors. We laughed at the irony and proceeded with our end-of-therapy goodbyes. I proceeded with other meetings and work, and at the end of the day felt the need to process. I found my place on a sunny grassy knoll and reflected on shame. I cried tears for myself and for the countless others who feel the need to apologize for our unique ways of existing.
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.