Crip Time

Over the past months of shelter-in-place, I have felt the disconnect between crip time and linear time. Crip time refers to the difference in time for people with disabilities. We're late because our available transit options take longer. We can't work 9-5 because our bodies can't. We engage in countless hours of invisible labor to get the accommodations we need. I've been writing a piece on crip time, as well as a piece on my debilitating eye strain migraines with all I do now on screens, but because of those limitations I have not yet finished those pieces.  So, rather than offer my own thoughts, I want to encourage you to read this beautiful essay that describes the diverse implications of crip time: https://dsq-sds.org/article/view/5824/4684

"Crip time is time travel. Disability and illness have the power to extract us from linear, progressive time with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings. Some of us contend with the impairments of old age while still young; some of us are treated like children no matter how old we get. The medical language of illness tries to reimpose the linear, speaking in terms of the chronic, the progressive, and the terminal, of relapses and stages. But we who occupy the bodies of crip time know that we are never linear, and we rage silently—or not so silently—at the calm straightforwardness of those who live in the sheltered space of normative time."

Invisible & Hypervisible

I am often both invisible and hypervisible, in a paradoxical and misunderstood dialectic. Through the brilliant, witty, and endearing podcast AcadaDames, I was introduced to this terminology of invisible and hypervisible from black feminism to describe the experience of many women of color in academia. One of the hosts, Whitney, explained how she experiences this paradox as a tenured professor at a competitive research university. On the one hand, people often ignore or forget she’s in meetings and question her status, assuming “oh you must be a post doc.” There is an invisibility about who she is. At the same time, she experiences hypervisibility as a “token” person of color who literally stands out in white spaces.


I empathize with this paradox as a disabled woman in able-bodied spaces. I feel invisible when others forget about my disability and related access needs, express disinterest in how I access the world, or when people in my building avoid or ignore me when I’m using my cane. Though my cane is meant to signal that I may need space since I can’t see, I still want to socialize when passing in the hall - I just have to know you’re there! At the same time, (I'm told that) people stare at me. I stand out because there aren’t norms or models for how to accommodate blindness in able-bodied spaces. When colleagues instrumentalist my disability status by asking me to “speak on behalf of the disabled” or evaluate the accessibility of an event or platform, my disabled identity is made hypervisible.


Beyond the invisible and hypervisible aspects of my disabled identity, there is a hypervisibility and invisibility about how I work. At surface, my work is literally hypervisible to others with sight: my magnified screen can be seen from quite far away. I can’t subtly check my email without others seeing me bring my screen to my face, being able to read my magnified content or hearing my text-to-speech. My work is also invisible because I do everything, and I do mean nearly everything, differently than someone sighted. I “read” by listening. I adapt the conventional roles of clinical work by requesting that my clients read worksheets and responses out loud. The ways I access the world are often invisible to those around me.


I still succumb to pressures to appear able-bodied; at times I strategically seek to make my disability invisible. I laugh along when I haven't seen what's funny, I turn my screen away so others cannot see my magnification, I use headphones when using VoiceOver or text-to-speech so no one hears how I’m accessing materials, and I won’t use my cane if it’s not needed. I often don’t want to call attention to my disability because it may mark how I don’t fit in with academic or social norms. I find this to be one of the most tragic consequences of this visibility paradox. We are shamed into believing we don’t belong. Why is my way of doing things worse than yours? Why is my body not worthy of being seen as it is? Why do I need to change myself or how I access the world to help the able-bodied feel more comfortable? I've learned that my attempts to downplay my disability often backfire and promote additional invisibility and pain.


At times, I need to make my disabled identity hypervisible. An unfortunate lesson about reasonable accommodations that I’ve had to learn repeatedly is that the squeaky wheel gets the grease. This means that I need to announce my low vision early and often to ensure others’ accommodate my needs. This hypervisibility comes at a cost: it can be both exhausting and limiting. Pre-empting access needs and alerting all relevant parties requires attention to detail, coordination, and lots of nagging. I am more than my disability and related accommodation needs, and the often imbalanced hypervisibility of this aspect of my identity, although necessary for communicating access needs, can trigger lack of belonging and perceived burdensomeness.


As seemingly contradictory as it sounds, I experience sight in a similar paradox of hyper visible and invisible. One of the complicated parts of being somewhere on the low vision spectrum is that I cannot relate fully to the sighted or the blind experience. In many ways, I have sight: I see colors, shapes, and textures. In other ways, I lack sight: I cannot read words strung together or recognize people or faces. To the blind, I am hyper sighted; to the sighted, I am hyper blind. Consistently inconsistent, I am blind and sighted, invisible and hypervisible.

Covid-19, what else?

As the global pandemic hold us captive, I find myself reflecting on the unique individual experience that culminates in shared suffering around covid-19. We’re all struggling through unforeseen challenges amidst these unexpected and uncertain times. The exact nature of those challenges is idiosyncratic, and, of course, intersects with identity. In this post, I’ll share a bit about my frustration, grief, and fear as an academic with a physical disability.


Around the globe, covid-19 has necessitated that companies and schools make accommodations: working from home, recording meetings for those unable to attend in real time, alternative formats of materials. Seemingly overnight, workflows have been revolutionized. The widespread search for adaptation has me thinking a lot about willingness and motivation. Now more than ever we have technological innovations that enable us to consider novel strategies for more flexible working and learning conditions. I’m so incredibly grateful for how rapidly my institution has established infrastructure to enable remote work. At the same time, I want to scream from the rooftops “why did it take so long!?”People with disabilities and caregiving responsibilities have been requesting accommodations like these for years. Those with chronic illnesses have pleaded for flexible attendance policies and the ability to record meetings and classes. I’ve begged instructors and employers to provide me with alternative formats, such as enlarged or digital materials compatible with text-to-speech or voiceover software. Although it is fortunate that advent of the coronavirus has necessitated additional adaptability and flexibility,, I am disappointed these steps are only taken once the able-bodied need them.


Accommodations historically deemed impossible are now widely available. The swift actions taken in the last few weeks confirm many of these accommodations have been feasible all along, there simply hasn’t been sufficient willingness and motivation. Because these requests have historically been made by the disabled, these requests have been seen as “too much:” too costly, too cumbersome, too individualized, too unsustainable. Now that the able-bodied have the same requests, companies and schools are now finding a way. My hope is that the uncomfortable and frustrating experience of learning new ways to live provides empathy for those with disabilities who must make adaptations all day, every day. Living in an able-bodied world as someone who is physically disabled requires creatively adapting and redesigning environments that were not designed for our bodies. My experiences adapting to my changing visual needs have taught me problem-solving, flexibility, patience, and persistence. Covid-19 is forcing the able-bodied to adapt and redesign now too, and I’m hopeful that experience will cultivate greater willingness to brainstorm and implement reasonable accommodations for others.


On the one hand, the shifts to remote work provide much needed and overdue accommodations, on the other, many of these tools and systems are still overlooking accessibility needs. I want to preface the forthcoming diatribe by acknowledging that I am voicing my own suffering, knowing full well that we are all suffering in different ways. My suffering is no better or worse, bigger or smaller, than your or anyone else’s suffering, it is simply my experience. My suffering has taken the form of lack of access and feelings of being unseen. The move to remote systems has required that I learn new software tools and protocols. I’ve been in frequent conversations with other blind academics as we’ve tried to learn these new technologies without sighted assistance. Sadly and unsurprisingly, many of these technologies are not intuitive or compatible with assistive technology. Additionally, during the academic year, I have a sighted assistant through the Disabled Students’ Program who helps me with particularly inaccessible tasks, but I don’t have that assistance now, which means I allocate more of my time to completing less accessible tasks, often leaving me feeling inadequate, frustrated, and exhausted.


Alongside these practical challenges, I’ve also felt the painful isolation of being unseen. When discussing the move to phone-based clinical sessions for my client, one of my clinical supervisors remarked “you couldn’t possibly deliver that type of intervention without being able to see the client!” Ahem, as a blind therapist I can never see the client. And I don’t believe that has made me a failed clinician. Likewise, in meetings and classes, many of my peers and colleagues commiserate about how hard it is not to see people’s faces and body language or experience the joy of mingling at the office. These benign and well-intentioned remarks make me feel isolated because I’ve experienced the difficulty and pain of of being unable to see others’ faces or engage in passive social interaction for a long time. My peers and colleagues validate each other about how unexpectedly challenging these conditions are, and I find myself wanting to shout, “It is hard, right? It’s lonely, isn’t it?” When I’m feeling less bitter, I want to offer how I’ve adapted to these and other obstacles presented by social-distancing, though I recognize that my colleagues are coping with temporary inconvenience, while I am coping with longstanding grief.


I’ve seen some compelling pieces that describe ways in which people with disabilities may be more or less equipped to navigate the challenges of social distancing (e.g. this thoughtful Forbes piece). People with disabilities are accustomed to being socially isolated, often because we’re misunderstood, excluded by design, institutionalized, or neglected. Many of the activities that have been taken away from the able-bodied during social distancing were taken away from me a long time ago. Depending on the disability, we may be more or less accustomed to solitude and isolation, and therefore may have an important perspective to offer about how to cope with lack of access to the external world.


A common thread in conversations about the pandemic is how “most of us” will be fine. I want to take a moment to talk about the “rest of us” who may not be as fine. Those with chronic health conditions and disabilities are often immune-suppressed and at heightened risk. There is now a widespread understanding that the healthcare system will not be able to treat everyone. So who will be chosen to receive care? Those most likely to survive. This means that many with disabilities and chronic illness will be deprived of treatment to preserve others’ lives. I understand that in times of scarcity we must prioritize, and I also want to hold space for the extraordinary pain of being determined by society as dispensable. I feel fear and sadness for my friends and loved ones who fall into this category, as the “rest of us” who are likely to experience diminished access to healthcare, irreversible health consequences, or death as a result of covid-19 are not any less human, any less loved, or any less valuable.


Whether we are part of the “most’ or the “rest,” we are still here, and we have a responsibility to keep living, keep growing, and keep fighting, pandemic and all. This absolutely does not mean that we proceed with normalcy, because nothing about this is normal. The messaging I’ve been receiving from several fellow academics is that this pandemic presents an opportunity to write more papers, analyze more data, and promote our careers (and apparently many grad students are having this experience). I want to challenge the desperate desire for productivity by suggesting an alternative. Hold space for yourselves and your emotions. I have experienced frustration adapting my workflow and fear for my loved one alongside immense gratitude for the joys in my life. I’ve enjoyed connecting with and serving my communities, and am now a fan of virtual yoga classes, book clubs, and coffee dates. I’ve relished in the time and space to connect with my loved ones, albeit in innovative ways. We are suffering, and we are alive. As we experience what it means to be alive during a pandemic, I hope we can also maintain our compassion, flexibility, and patience. We are all in this together, even if we are maintaining 6-feet of distance between one another.

Hindsight is 20/20, Even When Blind

The New Year provides an ideal opportunity to reflect on the passage of time, both another year and another decade. As a self-identified self-improvement junkie, this is one of my favorite seasons. I cherish the opportunity to assess progress and prioritize new goals. 

An area of my life worthy of reflection in 2020 is my lack of 20/20. And yep, I’ve now exhausted the vision-related puns. This has been the first decade I've lived legally blind, and along this journey I’ve learned about myself and my values, identity and intersectionality. I started the decade timid, insecure, and desperate to conceal my vision loss and its pervasive effects on my life. I used assistive tools, but I tried to limit the extent to which others saw me adapting. I jokingly blamed my vision-related blinders on being clumsy or having a poor memory, because I feared the repercussions of exposing myself. Over time, I’ve learned not to feel shame for doing things differently. I’ve gained skills using my other senses, such as listening to text at high speeds and applying make-up by feel. As I began accepting and embracing my vision loss and my disabled identity, I moved into more disabled spaces. I trained (and since retired) my first service dog, completed training in orientation and mobility (i.e. use a white can and listen to traffic signals), learned the basics of Braille, and wrote one published academic paper and over forty blog posts related to my lived experience with blindness. 

I’m grateful for these insights and experiences, and I will continue working on my relationship with my disabled identity in this upcoming decade. Living with a disability requires immense self-advocacy, and assertiveness has not historically been my strongest attribute. Whether I'm asking for a friend to guide me or negotiating reasonable accommodations from an employer, I hope to continue improving my ability to identify and communicate my needs across diverse settings. As an academic, I spend considerable time in my head. I love playing with new ideas and thinking about how to communicate them. But, I tend to get a bit stuck. I have nearly 50 somewhat-written blog posts that I “still need to finalize.” Moving forward, I strive to do more and think less in order to share more of my self and my work. 

In line with this goal, I am going to post this before vetting it thoroughly and tweaking it relentlessly. This is what it looks like to voice vulnerability and I’m doing it in 2020.

“How are you active?”

My husband and I recently returned from a honeymoon filled with hiking, canoeing, and adventuring. During our trip, we became friendly with another traveling couple. At some point in conversation my blindness came up, to which I was asked, “out of curiosity, how are you active? You mentioned you enjoy running and hiking, but you also just said you can’t see…”


The lay public often is unaware of both the barriers faced when pursuing an active lifestyle and the accommodations and alternative sports available for disabled athletes. As a recreational runner and fitness class attendee, I certainly cannot speak to the vast ways in which people with disabilities accommodate their training or sports. Instead, I offer my experience as an example for how I learned to accommodate my vision loss in pursuit of fitness.


I started going to the gym in college. I wasn't an athlete growing up, so I couldn’t fall back on muscle memory. Instead, I embraced being a novice. I asked friends who regularly used cardio machines to show me how they worked. I learned to feel for the buttons I needed: start, stop, increase incline. I listened for the beeps to signal changes in my settings. After I felt comfortable with cardio, I began asking friends to describe how to use various weight machines. I approached exercise with open curiosity and a willingness to ask questions. If I couldn’t figure out how a machine worked with poking, prodding, and adjusting, I asked someone to show me. I made countless novice mistakes. I found the machines most accessible to me and abandoned others. One feeble attempt at a stair master led to a nasty fall and deterred me indefinitely. Despite embarrassing moments, I developed a sustainable system; I memorized where my favorite equipment was and how to use it. I couldn’t see the numbers on weights, so each time I lifted a few and settled on some that seemed adequately challenging. Though I was intimated at first, over time the gym became a space for me to develop my body’s strength rather than focus on its limitations.


About a year after discovering the gym, I decided to try running. I started by run/walking indoors, alternating between the treadmill and track. On the track, I relied on both my limited sight and the sounds around me to guide me. When it wasn’t too noisy, I could easily hear where the machines were or if there were other people near me. After months on the track, I decided to try heading outside. My sight affords me the ability to see sidewalks and paths, but I was fearful of getting lost or hit by a car. I chose to run in familiar areas with little traffic. I ran during daylight hours when roads were least populated. I only crossed the street at stop signs. At first, I would circle the same few blocks. As I ran more, I learned to listen to my surroundings to keep myself safe. Over time, I gained confidence in my ability to run safely outdoors in familiar areas with minimal traffic.


I’ve since had the privilege to take my running to more settings. I still employ the same strategies. I minimize crossing the street or running near traffic. I only run in unfamiliar settings with someone sighted. For the last couple years, I’ve run at the lake near my apartment. Even on the protected path, I often find it too crowded to safely and enjoyably run alone. I limit my runs to times when the path is less busy. I choose when and where I run outdoors strategically. Still, I end up tripping a lot. Despite the occasional scrapes and bruises, I've fallen - literally - in love with running outside because it makes me feel capable and independent. Though I personally haven’t used a running guide before, I fully intend to take advantage of a valuable resource, United in Stride, that connects blind and visually impaired runners to local sighted guides


When I moved to California seven years ago, I began hiking. I started off with easy paved paths. Over time, I became more adventurous, going on steeper and narrower trails. I always brought my little adventure dog, Milo. Hiking with him by my side provided me with physical cues about the terrain. I could feel based on the movement of his leash how steep the incline was. He would avoid puddles, branches, and logs, so I follow his lead. Even with Milo by my side, I never hike alone. I always go with someone who can read maps and make sure we’re on the right trail. I often use hiking poles to feel the terrain. And I still rely on others’ to point out major obstacles in the path and to provide occasional step-by-step guidance: big rock on left, step down on right, go over tree root . I only hike with people I trust who are willing to go at my pace.


To answer the question posed: the way I am active is by doing what works for me. How I choose to exercise looks different from someone who is able-bodied. I am deliberate about pursuing the forms of movement that are enjoyable and accessible for me. I am able to run, hike, and do yoga by being patient, accepting, and compassionate towards myself and my changing abilities and needs.

Embracing Body Diversity

Amidst my morning commute, I scanned to crowded train car for handles. I noticed a nearby women who was especially tall, with her head hovering an inch below the train car’s ceiling. I saw that her patterned sweater, gathered around her hunched shoulders. Noticing her posture, I wondered if she often tried to shrink herself to hide her height.


Another women weaved through the crowded car and approached her, saying, “Excuse me, I wanted to share how beautiful you are.” The confident, strong female voice came from another particularly tall tattooed woman. The woman in the patterned sweater was soft-spoken. She thanked the tattooed woman.


The tattooed woman launched into a defense of tall women. She sought to connect by commenting on “how everybody stares” and “the pros and cons at concerts.” All the while, the women in the patterned sweater smiled, nodded, and offered brief, albeit quiet, words of agreement and understanding.


The woman in the patterned sweater asked the tattooed woman about her confidence. I sensed she felt uncomfortable in her own skin and wanted desperately to understand how this tattooed woman walked with her shoulders pulled back and her head tilted high. The tattooed woman shared that its been an evolution, and that much of her confidence is in part due to her relationship with a “petite butch woman.”


The tattooed woman explained how she and her petite girlfriend commiserated about being stared at, being bullied, and feeling as though their bodies were not good enough. Despite differing in height and femininity, these women shared the same body shame. The tattooed woman explained that is was through this relationship that she gained self-acceptance and the appreciation of body diversity.


The woman in the patterned sweater reached her stop. The two tall women exchanged affirmations of each other’s beauty and parted ways.


I was moved by the intimacy and vulnerability expressed during this commute conversation. I wondered if the tattooed woman’s story offered inoculation against the shame I sensed in the woman in the patterned sweater. I was saddened by how much she seemed to try to hide herself, shrinking into her sweater and speaking in a whisper. As my mind wandered, imagining these women’s lives, I reflected on the ubiquitousness. Their body shame is the same as my body shame.


We all, especially women, and particularly women in larger or disabled bodies, feel critical of our bodies. We feel not thin enough,, not tall enough, not young enough, not toned enough, not graceful enough. For those of us with chronic health conditions and disabilities, we often feel frustrated that our bodies don’t work well enough, can’t do what we want them to do, or don’t have stamina.


And yet, look what our bodies do for us. Every body offers us life. Whether sighted or blind, hearing or deaf, tall or short, feminine or masculine, white or black, our body offers us the privilege of living on this earth. Of course that body is limited, as all bodies are. Our bodies, with their limitations, warrant compassion rather than criticism.


Beyond feeling gratitude and compassion for diverse bodies, I was also struck by the power of perspective when witnessing this conversation. These two women of comparable height had opposing reactions. The woman in the patterned sweater wanted to hide herself and minimize her height. The tattooed woman walked confidently, proud of her height and eager to compliment this trait in others. We can see the same feature as a strength and a weakness. We have the capacity to change how we relate to our bodies, and to others'. As an outsider, I easily admired both of these women for their unique and beautiful bodies. While society may try and convince us otherwise, we can see beauty, value, and strength in every body..

Update & Amazing Podcast Episode

I've got a lot of half-written posts that I'll finally have the bandwidth to wrap up and publish here, so expect more from me soon! In the meantime, I highly encourage listening to this podcast titled "What's It Like to Navigate the Bay Area While Blind?" This provides a look (ha, more like a listen) into how people with vision loss navigate the visual world, whether it's picking clothes to wear or commuting to work. This piece beautifully depicts how we can learn to use senses other than vision to gain information about our surroundings.