Sunday, October 23, 2016
Although many get nervous before giving a presentation, my pre-conference anxiety is usually a bit different.
Will the airport be easy to navigate? Where will ground transportation be located?
I gave up on taking public transportation in unfamiliar cities, despite being a poor graduate student. Navigating a public transit system I take daily can still present with visual challenges. I’ve decided that adding an unfamiliar public transit makes travel unnecessarily complicated. Nonetheless, finding one’s way to cabs and ubers in busy airports with convoluted ground transportation can be challenging and stressful!
How will I get from my hotel to where the conference is being held? Where will registration be? Will I need to fill out paperwork or forms on a computer? If so, will there be someone there who can help me?
I’m learning that sometimes it is easiest to ask for help. For years, I stubbornly pulled out my magnifiers and tackled check-in and registration forms. If an employee or volunteer is available to help me, my time and effort is better spent elsewhere. Using a handheld digital magnifier, though exceptionally useful, is still more time-consuming and arduous than borrowing someone else’s eyes.
Will the program materials be offered digitally? How will I keep track of the talks or posters I wish to attend?
Luckily, more and more conferences offer digital programs or apps. However, few of these take into account accessibility features like text-to-speech or Voice Over to enable low vision users to listen to content. This means I often resort to lots of zooming and scanning, which is slow. Especially when I cannot create a personalized schedule, it can take embarrassingly long to find upcoming talks, which of those I wish to attend, and where in the conference center I need to go.
Will room numbers be labeled large enough and in a bright enough space that I can see at least some of them?
I have gotten in the habit of reading a single room sign and counting offices or rooms to determine where to go. For example, if I see I am at room 310 and I am looking for 320, it should be the fifth room on that same side. This of course assumes that rooms are numbered intuitively, and that all even numbered rooms are on one side. When this isn’t the case, or when there is poor signage or lighting, I fumble between taking photos on my phone to enlarge the image and using my monocular.
While at the conference, what will I need to do in order to network? Have I organized my materials to know who is speaking when?
I cannot see name-tags. I cannot recognize people from less than a few feet away. I cannot see content during presentations, which means I cannot see the names of presenters or the institution with which they’re affiliated. This can present obstacles to professional networking. Often, I prepare ahead of time by noting who I should try to meet during which presentations.
During a few serendipitous occasions, it has been a good thing to be unaware with whom I’m speaking at a professional conference. Earlier this year, I happened to be in the breakfast line behind a rock star researcher. I struck up a casual conversation that became an exchange about research. Had I seen who he was, I would not have uttered a word, let alone discussed my research! To this day I wouldn’t have known if it weren’t for a fellow graduate student who came up to me afterward.
Of course, I have anxiety about the actual presentation. Will I be able to memorize the content – the order of slides, of bullet points? Am I going to forget some of the significant values?
I cannot read powerpoint slides or posters when I present. This means that for both talks and poster presentations, I must memorize all of the relevant content. I get nervous that someone will ask me a question about a statistic I haven’t memorized, and I will have to grope for context by asking, “wait, to what value are you referring? What was that standard deviation?”
Because it can be challenging to memorize the detailed content of presentations, I avoid animations that display text in a specific order. Unless it is especially intuitive, it is hard for me to remember what content is associated with which bullet points. Memorizing the order of slides and the corresponding content is hard enough!
How to ask and answer questions?
I cannot see when someone is looking to me to ask a question. This means I often awkwardly take the floor from others, or wait way too long after someone’s glanced at me to signal it’s my turn. I cannot see when others raise their hands. When I teach classes, I simply announce that this is the case and students should say something if I miss them. But, it feels awkward and revealing to say that to a room filled with professionals I know only by their journal articles.
My pre-conference self-talk: no matter what, it will all be fine. Ideally, this upcoming conference will have accessible programs and signage. Hopefully, I have enough time beforehand to prepare my program, bookmarking talks to attend and people I want to find. With any luck, the airport and city are easy to navigate. But, if the center is hard to get around or discerning the next talk in my program is overwhelming, I can always ask for help.
Posted by Jen Pearlstein at 11:18 PM
Saturday, October 15, 2016
My Progression through Bad Eyes, Visual Impairment, Visual Disability, Legal Blindness, Blindness, and Low Vision
At age 17, my vision began deteriorating rapidly. I was diagnosed with a rare form of early-onset macular degeneration. Having a permanent and progressive disease means that I continue to respond and adapt to changes in my vision. Some of these changes are fairly intuitive: as my vision declines, I use stronger magnification and rely more heavily on auditory information. Yet, many features of my vision loss involve less obvious transitions. As my vision declines, I update the language I use to describe my vision loss. I do not believe these shifts are purely semantic; instead, these shifts coincide with my changing sense of identity.
I first noticed something was wrong when I took a practice ACT my junior year. My neck ached for days after I spent hours hunched over my desk, squinting at materials. My scores were alarmingly below what was expected. I had a hard time reading, and I presumed I desperately needed a new prescription. When I went to the eye doctor, I was told that lenses couldn’t correct my vision beyond 20/70, and they had no idea why. After hours of testing and consultation with specialists, I had my answer: Stargardt’s.
When I was first diagnosed, I commonly referred to myself as having “bad eyes.” It wasn’t worth it to unload on to friends and strangers exactly what my diagnosis was or how it impacted my visual experience. Frankly I didn’t want the world knowing why I couldn’t see. Sharing this narrative felt too intimate and personal. It was so much easier to tell others that I had forgotten my contacts or wasn’t wearing my glasses.
Nonetheless, I felt different. Having navigated the world as a sighted person, I felt like something was being taken away from me unfairly and unexpectedly. I also felt that it was unacceptable to share these feelings. I didn’t want anyone’s pity or concern. I wanted to be strong, independent, and resilient.
Within months of my diagnosis, I stopped driving. To my teenage-brain, I was giving up my autonomy and freedom. I felt dependent. Although grateful for friends and family who drive me, I began feeling equally bitter that my schedule will forever be at least partially dictated by others. The reality hit: over time, I will rely more and more on those around me. I began to reconsider my expectations for my future.
Transitioning to college while simultaneously losing my vision was stressful. It became obvious that denying the reality of my vision loss was limiting me academically and socially. With this realization, I started using the label “visually impaired.”
I required academic accommodations, facilitated by Disability Services. I despised this process; I did not want additional attention or special consideration. Despite my best efforts to be unobtrusive, I needed a way to tell my professors what I needed and why, and the label “visual impairment” suggested that I had something that needed accommodating, but that I wasn’t broken or handicapped.
My sophomore year, I got involved in several organizations on campus. One organization, a community service sorority, Alpha Sigma Gamma, required that we do “ducky dates” – brief 10-15 minute conversations to get to know everyone in the organization. I felt too embarrassed during these brief initial encounters to admit my visual impairment. I didn’t want to be seen as dramatic or defective. It felt socially inappropriate to turn the conversation away from our favorite romantic comedies to instead highlight my disease. But, I also found myself feeling embarrassed and uncomfortable when I saw students wave and I had no idea if they were waving at me. My vision was bad enough that it was impacting my social relationships. I couldn’t see friends and acquaintances when we passed each other on campus. I felt like I was missing opportunities to connect.
I came up with a sneaky solution. At the time, it seemed brilliant; in retrospect, it seems cowardly and inauthentic. On a day I was unable to attend our general meeting, I had my bestie, Lena, make an announcement to the room of over a hundred girls that “Jen can’t see. This means she likely won’t recognize you on campus. This does not mean she doesn’t want to know you, so don’t be offended if she doesn’t wave and introduce yourself when you see her!”
To me this was the perfect solution: I would not have to put myself in the vulnerable and uncomfortable position of repeating this on every one of my ducky dates, and people would know that I wasn’t being an asshole if I didn’t recognize them.
There were unexpected benefits to going to a small school. When I walked with friends to and from classes, they whispered to me cues like “that’s Sarah, Becca's roommate” so I would know to say hi. I reflect with gratitude; this small and enmeshed community enabled me to avoid countless awkward situations.
After college, I moved with my boyfriend across the country. I had to learn how to get around a new and unfamiliar area much larger than my small college town. I also knew one person, my boyfriend, reducing the availability of helpers. In Missouri, my family and friends were helpers who could drive me to appointments, networking opportunities, social gatherings, etc. With fewer comforts like helpers or familiar destinations, I had to learn new ways of traveling alone, including the use of public transportation. I would like to point out that public transportation is challenging when you cannot read the ticket machine, bus or train numbers, the stops, or street signs.
“Visual impairment” did not adequately encompass the extent to which my vision loss impacted my functioning and my identity. Although I didn’t especially appreciate the term “disabled,” I felt that the phrasing, “I have a visual disability” highlighted that there is this thing that is wrong with me that impacts how I navigate the world.
Coinciding with this change in label, I encountered my first experience of flagrant discrimination. After spending months volunteering for two research labs, I had a job offer in hand. I used this offer to try and entice the other lab in which I worked to hire me. During this negotiation, my potential employer expressed concern. “How can you possibly do this job without being able to see?” I explained the assistive technology I use, and reassured him that I’d been successful as a volunteer. The role involved clinical work, and he said, “I just don’t get how you could see well enough to work with patients.”
Luckily, I had an ally and an advocate behind the scenes. I continue to love and admire her as a mentor, friend, collaborator, and overall phenomenal human being. Months after I was brought on, she informed me she convinced this employer that I was a capable and worthy hire.
I questioned the use of “visual disability” because it’s vague. Although I have a visual disability, I worried this didn’t describe anything about my visual experience. The term “legally blind” was factual, practical, and to the point. Legal blindness is defined as vision worse than 20/200 in both eyes despite corrective lenses, a threshold I surpassed four or five years ago. It seemed this label adequately suggested severity, and distinguished my vision from total blindness. Further, the use of the label, “legally blind” led me to feel entitled to request services and accommodations. I was legally blind, after all.
Around this time, one of my closest friends was training her service dog. I looked into it, and I certainly qualified. I got my adorable pup, Milo. The four of us – Paige and Raleigh, Milo and me – completed extensive training with Operation Freedom Paws. Milo helps me navigate crowds, sense depth, and travel independently.
Using a service dog was an outward display of my disability. It seems having a service dog automatically signals to the world “there is something medically wrong with me! Please come talk to me and distract my dog.” I respond to questions about why I have Milo,“ I’m visually impaired; actually, I’m legally blind.” This answer tends to make sense to people; that’s the common association with working dogs. In fact, one of my favorite questions, asked by an overly exuberant Peet’s barista, was “is that a blind dog?” Meaning, of course, “is that a guide dog for the blind.” No, my dog is not a blind dog; he is sighted.
And no, Milo isn’t a guide dog. He is a service dog. This means he did not complete the training at guide dog academies. He helps with some aspects of my vision loss, but not others. After a few years exclusively traveling with Milo by my side, I since reserved him for specialized activities. He’s the best little dog a gal could ask for, but he can make my professional life more encumbered rather than less.
Traveling with Milo has taught me the value in confidently and publicly identifying myself as someone with significant vision loss. I now announce my vision loss at orientations and trainings. I mention it to store clerks, waiters and waitresses, and frankly anyone who I will benefit from being aware.
After moving up the peninsula to San Francisco, I became involved in a host of non-profit organizations targeted at providing services for the blind. Inspired by the efforts of advocates, I felt empowered to refer to myself as blind.
I started receiving services through the Department of Rehabilitation. I completed orientation and mobility training and started using a long white cane. I learned Braille, though I am still trying to improve my speed. I began to feel “blind.”
Identifying as blind progressed my views. I learned more about the blind community and the history of the disabilities movement. I procured profound empathy for others living with invisible illnesses and the challenges of identifying with a minority group. Recognizing the reality of discrimination enlivens my belief that it is impossible to discern individual worth from ability, wealth, skin color, socio-cultural background, gender, or sexual preference. I am now more of an advocate for empowering rather than silencing minority voices.
Despite the pride I feel about my personal strength and accomplishments, still I fear disclosing my disability. I regularly have to defend my qualifications. Sometimes, this is because others presume I am less capable due to my blindness. Other times, this is because others presume I am receiving special treatment due to my blindness.
I have had the incredible privilege to receive two fellowships for my graduate education. Both fellowships include the diversity of applicants in their decisions. Unintentionally, friends and colleagues alluded to how I was “lucky” to be blind. I became exceedingly sensitive, and even questioned my own qualifications. Was I receiving these prestigious fellowships to boost the number of students with disabilities receiving awards?
It is appalling that those of us identifying with minority groups are forced to question our achievements. Many continue to believe that beneficiaries of fellowships and awards prioritizing diversity are less qualified. We are deserving of these opportunities both because of and in spite of our minority experiences. Unfortunately, some aspects of life are more challenging as someone who is blind or black or transgender. Until structural discrimination no longer exists, I will proudly acknowledge the ways in which my disability deserves a sensitive eye.
While working with a therapist who is fully blind, I began to process my vision loss and its impact on my identity. We discussed the challenge of being in the gray area of blindness. I don’t fit with the sighted. I obviously navigate the world differently as a result of my vision loss. I don’t fit with the blind. I obviously do not navigate the world as if I have no vision.
I can certainly appreciate the belief held by members of the blind community that those with usable vision should not call themselves “blind.” Although I believe I fall under the umbrella of blindness, I now stray from the term “blind.”
I have low vision. This description, similar to legal blindness, is descriptive and honest. It doesn’t sound as lawful or rigid as “legally blind.” Because I have low vision, I use assistive technology. I often travel with a service dog or a long white cane. I read large-print and Braille. I’m sure the tools I use will continue to change, and likely so will the label.
Posted by Jen Pearlstein at 12:05 AM
Thursday, October 6, 2016
October is blindness awareness month! A fellow blogger and blind academic, Emily K. Michael, whose work and advocacy I truly admire, has compiled a series of interviews to highlight experiences of people with blindness and low vision. You can find my interview here, and I recommend perusing her wonderful blog on writing, disability, and so much more.
Posted by Jen Pearlstein at 9:54 AM
Monday, October 3, 2016
I spent this past weekend at a conference for the Society for Research on Psychopathology (SRP). During the Presidential Address, my brilliant research advisor articulated complexities of understanding the etiology, course, and treatment of bipolar disorder. Voicing incredible vulnerability, she shared a personal story about a friend of hers, who was a determined and passionate woman with multiple graduate degrees and an internationally acclaimed career. While she was seeking treatment during a period of sickness, her doctor told her that her ambition was fueling her illness, and she needed to reduce her commitments and reassess her lifestyle. The following day, she committed suicide. Life was not worth living if she could not embrace her ambition. My advisor compassionately explained that for many experiencing bipolar disorder, aspects related to periods of illness, such as high ambition, are also cherished aspects of identity.
I share this to portray the dialectic of mental illness, disability, and adversity. In so many ways it is a source of struggle and of pain. And yet, it is often what makes us who we are.
Before delving deeper into my thoughts on this theme, I wanted to share a brief anecdote depicting my own experience. After writing my last blog post, my dad emailed me saying, “I know there is nothing I can or could do, but I still can’t help but feel like I wish there was some way I could have prevented this or that I could fix your vision disability. It is only my nature.”
I responded, “I wouldn't change it, frankly. I think I've learned so much - about myself, about the world. I appreciate the sentiment, but I don't know that I'd be where I am if I hadn't experienced vision loss.” I hoped to reassure my dad, who I think feels guilt for not being able to protect my brother and me from the challenges we face, as well as to articulate the ways in which this experience shapes my perspective on the world and pushes me to grow in unexpected ways.
I have been thinking about related research on resiliency, some of which I saw at SRP (i.e. George Bonanno). A trauma, illness, or other stressor can feel excruciating and insurmountable in the moment, and yet afterwards, we can find meaning that enhances wellbeing. This response to trauma is referred to as post-traumatic growth, characterized by feeling more gratitude for life or greater appreciation of loved ones (i.e. as described by Lawrence Calhoun). Trauma, though inherently tragic, can bring us together and help us reconnect with what is important to us. I take away from this that not all adversity is all bad all the time; there are positive outcomes that result from challenge. To me the important questions then become how to facilitate this post-traumatic growth, and what is it that enables one to find meaning in adversity.
As a clinical psychology graduate student, I often consider how this relates to mental health. In the personal story shared by my mentor, it is clear that ambition is a common thread both in illness and in strength for many people experiencing bipolar disorder. There is fabulous work showing myriad adaptive functions accompanying depression, autism, and the like. Depression has been related to increased empathy, and has been experienced by inspirational leaders like Martin Luther King, Jr., and Mahatma Ghandi. Autism leads to attending to detail and thinking in pictures or patterns, and advocates such as Temple Grandin have described this as an asset in her career. Importantly, this movement towards recognizing the adaptive functions and meaning that can be gained from otherwise exceptionally difficult experiences offers promise to de-stigmatize mental illness. I also wonder if the ability to find meaning results from framing adversity and illness both as a source of potential suffering but also as a source of perspective, strength, and insight.
My belief in the importance of finding a broader meaning in these experiences makes me disappointed by how little this notion is emphasized by the healthcare community. The medical model views challenges to health – both physical and mental – as diseases that need to be treated, ideally cured. The obvious goal of this model is to eradicate disease. I see a discrepancy between this model and my fundamental belief in viewing diseases (and other forms of adversity) as challenges to face, and as opportunities from which we can learn about ourselves and others. That is not to say I would wish illness, disability, or other adversities on anyone. But, these adversities are an inevitable aspect of life. I wonder to what extent treatment could be improved by taking an approach that encourages pride and ownership of illness and disability, striving to build an identity that includes but is not defined by the illness or disability. This approach is not meant to minimize the extensive acute or prolonged suffering that result from adversity; instead this approach provides a way to cope and find meaning. Shifting schemas held by the healthcare community to emphasize this challenge-oriented mindset would likely foster resilience and reduce suffering.
One of my favorite quotes is by Andrew Solomon, “forge meaning, build identity.” This message resonates with me deeply. Often, we cannot change the struggles we face – whether it be in the form of illness, disability, discrimination, or bullying. What we can command is our narrative. And that narrative can be a source of strength, identity, and meaning.
Posted by Jen Pearlstein at 8:56 AM