Compared: Credibility, Capability, and Disability

What’s visible, what’s invisible, and how we’re judged

Last week, my husband and I were at my mom’s apartment, helping her with various tasks. We’ve had this conversation before, and yet here we were, having it again.

“How is it that your brother is so much blinder than you?”

Landscape with the center blacked out to approximate how people with diverse forms of macular degeneration see. This is not fully accurate; phenomenologically, the brain attempts to fill in the missing area, so the experience is often more like a hazy mix of colors and distortion than a blank spot. In addition, most people naturally shift their gaze, so the area is rarely fully blank, as each eye fills in different parts of the scene.

For context: my brother and I have the same form of degenerative vision loss. He was diagnosed almost a decade after me, and to my knowledge, our visual acuity is likely quite similar. One of us may have slightly less vision than the other, but I couldn’t possibly tell you who. Functionally, though, our families are regularly astounded that we have the same condition. We present very, very differently.

My mom described how incapable she perceives him to be. He can’t cook his own food. He can’t clean up his trash. He can’t pay bills. He can’t use a cellphone. I bristled internally, because can’t and doesn’t are not the same thing. This isn’t about limiting my brother’s capacity; it’s about how even this slight difference in language frames perception.

She sees his limitations starkly and constantly. By contrast, she often forgets that I have a disability at all, let alone one similar to his. She’s surprised when she notices me feeling for the correct button on the elevator or when I use text-to-speech or voice commands on my phone. She regularly says some version of, “I forget you’re also blind.”

So what explains the difference between my brother and me?

There are many factors, far too many to unpack here, that shape why we are perceived so differently. But one factor I want to name is that I do a tremendous amount of invisible coping. That coping does not make my response inherently better or worse. It does make me show up very differently. This difference in coping means we are supported, seen, and rewarded in different ways.

My husband was the one who gently helped articulate this to my mom.

“You don’t see Jen’s labor,” he explained. “She counts steps to know where she’s going. She feels for items on surfaces, often very subtly. She reads information auditorily ahead of time like menus for restaurants and notes for meetings so she doesn’t have to access in real time. She’s always learning new accessibility tools and updating how she does things as technology changes.”

A phone held close to the face, a common strategy for accessibility or assistive technology use.

I appreciated him speaking up for me. He saved me the labor and energy I so often expend helping others understand. I felt relief and validation at how well he gets it, but also that familiar disappointment and anger: many people close to me don’t know my needs, or the effort and planning it takes to accommodate them.

I also wondered whether the message landed better because it came from someone who is able-bodied. I know I’ve shared these aspects of my reality before, and yet on this day, they were heard. Why? What does it mean that this labor was articulated through someone else?

My mom’s jaw was on the floor. She had no idea how much unseen work I was doing just to move through spaces that were never built with me in mind. She started asking more questions.

“How do you clean?”

Hands in rubber gloves cleaning a surface (though I rarely clean with gloves, since I rely on tactile input to guide me).

I explained how much I rely on touch.

“But you maintain eye contact.”

I explained that I can usually tell generally where someone’s eyes are based on the direction of their voice and the general outline of their head, even though I can’t see eyes at all.

Over time, I’ve developed compensatory strategies to make my life easier: to navigate independently, to access information, to complete everyday tasks. These strategies increase my functional independence in very real ways. But I still find myself wondering whether they also make me appear more capable than I actually am, and what that even means.

Is it internalized ableism that nudges me to approximate eye contact? Or is it a social skill, an understanding that this is how many people feel connection, and a choice to meet them there when I can? Where is the line between skillful adaptation for my own access and something closer to respectability politics that involves complying with able-bodied norms for collective comfort and less judgment and discrimination?

It’s complicated, because complying with able-bodied standards does increase my inclusion. If I count steps to move independently between spaces, that genuinely gives me more autonomy, and it also makes me appear more able-bodied. I want to believe my priority is the former. And yet, I still question how much I’ve cultivated these strategies for the latter.

At some level, I know it’s always both.

And still, I notice how much I feel the need to justify myself, to insist that these strategies aren’t about making others comfortable, but about preserving my independence. That impulse is tangled up not only with my own survival, but with my commitments as a disability and social justice advocate, with the desire to model something different even as I’m caught inside the same norms.

There is ubiquitous deep misunderstanding about how differently disability can look, even when the diagnosis is the same. Every body is different. Every disability is different. Even within the same person, functioning can fluctuate from day to day depending on the demands of a situation, the supports available, familiarity with access, and other factors. How we cope, how we adapt, resist, compensate, or refuse, is deeply shaped by context, personality, support, and opportunity.

And it’s shaped by the stakes at hand. We live in a society where appearing able-bodied affords credibility and competence. At the same time, appearing able-bodied means not being believed, having needs dismissed, and denial of resources. Invisible labor can have pros and cons, whether it highlights or conceals disability. I’m sure how I appear has helped me in the workplace, whereas how my brother appears has helped him access Social Security disability benefits. I also reflect on how I flex the appearance of capability, particularly in parenting contexts, given fears of judgment or more severe consequences (as I described in my recent piece).

So even when two people share the same disability, we may look very, very different to the outside observer. When my brother and I are compared, it’s not our actual blindness being measured. It’s who is judged as credible, capable, and worthy of support.