Tuesday, October 24, 2017

Unseen Costs of Disability

I’ve been listening to several podcasts featuring disability (shout out to Jasmine for starting me on this quest by recommending This American Life, Episode 629: Expect Delays). Although I want to highlight and thank each and every episode that tastefully and thoughtfully addresses ableism, I’ll abstain from a lengthy playlist and instead will highlight a theme that has resonated with me lately. 

To quote Carrie Wade on Bad with Money, Episode 5: Close to Normal, “When you say what’s the cost of being disabled…. It’s not all just money; it’s also time. Being disabled takes so much time. Because it takes you longer to do anything Whether it’s alone or with help or somewhere in between. You’re going to need the time to do that. And then you’re probably going to be really tired at the end of your day, so you’ll probably need to go to bed earlier than other people and that cuts off some hours. There’s also the time you spend explaining to able bodied people why they need to ‘Shut the fuck up!’”

I identify with this unspoken cost of disability. It’s hard to explain or quantify. I see myself in each of Carrie’s examples: the direct loss of time by being in an able-bodied world, the indirect, often unseen downstream effects on time, and the emotional labor in social contexts.

Practically, having a disability makes specific tasks take longer. For me, low vision makes paperwork painstakingly time-consuming. This weekend, I had to sign and mail a few items. It took me hours to complete the task. I am pretty confident most able-bodied people would do it in less than fifteen minutes. And even when I rely on others for help with paperwork, I still have to dictate information or provide signatures. No matter how I accommodate, many activities will simply always take longer.

I further share the frustration at time lost due to the indirect effects of the disability. For many, this is fatigue. For me, it’s excruciating eyestrain headaches (ahem, eyestrain migraines). They are most common on days I have to fill out paperwork. I’ve learned over the years how to best avoid these headaches (bless text-to-speech and voiceover), but they’re not avoidable. I reflect on countless nights in college when my best friend, Lena, read aloud my textbooks while I rested with a cool rag over my eyes and forehead (yes, she is one of the most amazing humans). I treasure this particular memory, and yet, most of my lost nights are painful, lonely, and discouraging.

Despite my pride in using my voice to educate about ableism, it’s tiring. Asking for help is tiring. Explaining my needs is tiring. Many people from underrepresented groups experience time wasted by explaining, and re-explaining: gender identity and pronouns, sexual orientation, religious beliefs, cultural identity, family of origin, race, and more. Don’t get me wrong, I would rather answer questions and clarify misconceptions than enable ignorance. I know it is in my best interest to assert my needs. And at the same time, doing so can be exhausting.


I share these unseen costs of disability cathartically and indulgently. In addition to venting, I hope to illustrate the effects of disability often extend beyond the disability; some of the most profound costs are social and financial. Frankly, my greatest challenges being disabled have little to do with being physically unable to see.

Note: The episode of Bad with Money cited is focused on displaying the extensive financial challenges faced by people with disabilities. The episode covers SSI/disability benefits, paratransit, medical visits and procedures, etc. Time is simply one small piece that contributes to the financial burdens experienced by those with disabilities, and it is worth checking out the episode for more! 

Wednesday, October 11, 2017

The Irony: Exclusivity in Pursuit of Inclusion

While at a meeting of diverse scholars focused on improving diversity and inclusion, I encountered silencing, albeit unintentional. The leader of the meeting devised a writing activity involving writing ideas on sticky notes, then posting them in categorical clusters on the wall. The activity “had to be done on paper,” and no one was permitted to use a computer. My vision loss makes writing and reading very challenging - I use assistive technologies to magnify material or provide text as speech.  Although I could write my own ideas on notes, I could not participate fully in the activity because I couldn’t read others comments, preventing me from synthesizing themes or drawing conclusions.

On multiple occasions I asked others to read the post-it notes on the walls. Almost all ignored my request, presumably not hearing or not understanding. One person said "ah of course, this must be so hard for you" and then proceeded to turn away from me, excluding me from the exercise. Another person provided an interpretation of comments rather than comments themselves, then informed me how to think about these comments, removing the space for my perspective and voice. At one point, the group leader instructed someone reading aloud for me to “read to yourself, I want you all to engage on your own first,” which removed my access to the material.

Beyond asking others to read aloud, I attempted to use my phone to magnify materials, though my efforts were futile (red pen on yellow paper is hard to read, no matter how magnified). I began feeling discouraged. I requested to type, sharing this was because I couldn't see. I wasn’t being heard. Why wasn’t anyone listening to my requests for help? I was getting frustrated. Admittedly, I needed to be more assertive and explain more thoroughly. At the same time, I was defeated after my many prior requests. As one of the younger and more junior people present, I frankly perceived myself as beholden to the power structure when others carried on with activities without acknowledging my requests for accommodation.  My experience would have been substantially improved if more people were open to making the activity accessible to my differences in ability.

I left the meeting feeling heavy with my sadness. I was in a room fighting for inclusion with fellow advocates, and yet still my needs were repeatedly overlooked. I was struck by the painful irony, and felt moved to use this as a learning opportunity.  

I raised this issue with the committee. There is rarely an infrastructure to support accommodations in environments like these. I am a member of the campus’ disabled students program, which provides me accommodations in classes such as audio note-taking software and digital materials. I have worked with employment offices in respect to my teaching obligations. I coordinate with the director and staff of the clinic where I provide therapy and assessment services. And yet, so many activities lack structural supports for inclusion. How do I alert every committee, meeting, lecture, or training I attend? Whenever the space is provided, I certainly advocate for myself, explain my needs, and request accommodations. But, sometimes, the space isn’t provided.

By collectively providing the space for accommodations, whether it’s digital alternatives to print materials or the use of preferred pronouns, we become more inclusive. We should deliberately plan to flexibly accommodate all needs across all settings. My hope is that it becomes our cultural norm to abstain from assumptions and ask for preferences by always offering the option for accommodation.

In practice, this involves welcoming the conversation. Had this committee leader sent an agenda or activity description to the committee in advance, I would have shared my need for accommodation. Had he opened the activity by asking if anyone would benefit from alternative formats, I would have shared my need for accommodation. Asking the questions and formalizing the opportunity ensures accommodations are more likely to be provided. Instead, without the space for accommodating, I made frequent feeble and ignored requests.


I genuinely believe those around me simply did not expect someone to be unable to participate in this activity. They could not comprehend the meaning in my statement “I cannot see.” They likely assume someone blind or deaf has to look a certain way. With no marker of my difference, how could I actually be disabled? Or, perhaps they think someone blind or deaf wouldn’t even be in the room. If I really couldn’t see, how am I in graduate school? How did I independently navigate to the meeting location? In any case, this ignorance propagates the underrepresentation of people with differences in ability. This ignorance stems from privilege, and has the potential to exclude the exact voices that we, especially in this case, strive to include.  

Friday, September 8, 2017

Meditations from the Tattoo Studio

Day before yesterday, I joined my dear friend to get her first and my fifth tattoos. Bonding over buzzing, we entered the expedited intimacy that arises when someone permanently alters your body with their art. With the artist etching into my friend’s shoulder, we chatted about each other’s lives, spirit animals, and the current social and political climate.

We also discussed my vision loss: diagnosis, prognosis, use of assistive technology, and accommodations.  Throughout, both my friend and our artist asked questions with genuine curiosity.  They sought to understand my experience. My friend joked, “I’ve known you for years, and we’ve discussed a lot about your vision, and still I’m learning so much about you!”

She was right, we had spoken a lot about my vision. But, we had often spoken about my vision as it relates to my identity and perspective. Surprisingly, the features of my vision loss I encounter most are the asked about least. Conversations about my vision loss rarely center on what I see and how I see it.

Perhaps it is simply awkward to ask a question like “how do you see?” Indeed, it may seem intrusive to probe “have you always had low vision?” or “how do you read?” Maybe my sensory experiences aren't that interesting. In any case, I welcome these questions. When coupled with acceptance, these questions signal a desire for empathy and understanding.

For the last year and a half, I’ve attempted a daily gratitude practice. Coincidentally, one of my clinical courses included a gratitude mindfulness practice the morning of our tattoo sessions. Inspired by these practices, I want to publicly acknowledge my appreciation for those who approach difference with curiosity and humility. Asking questions, seeking understanding, and avoiding judgment creates connection. I value thoughtfulness, openness, and compassion, as displayed by my friend and our artist. I am grateful for these women for giving me the space to be seen.



Monday, June 19, 2017

“Isn’t it a compliment I always forget about your vision loss?”

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

YouTube Video: Things Not to Say to a Blind Person

I want to pass along this amusing BBC Three video about what not to say to a blind person. This gem covers a lot of the misconceptions about blindness in an engaging and funny format.

Thursday, May 18, 2017

How My Therapy Client Taught Me About Shame

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.