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!