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! 

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.