“Oh, we don’t have closed captions for this.”
I felt the disappointment in my stomach.
Later that same week, I went to another online poetry event — for the first few minutes. I left once it became apparent closed captions weren’t available there either. I have visual and auditory disabilities, making closed captions the easiest accommodation for me to participate in live Zoom events.
When the pandemic began in 2020, I remember nondisabled people saying how “inconvenient” it was to adjust to living in a socially distant world where virtual events replaced in-person events. For event organizers, learning how to host Zoom meetings was enough of a bother, let alone learning how to create accessible Zoom events. But without accommodations like closed captions, disabled people were not just socially inconvenienced— they were socially excluded.
The pandemic has amplified a hundred-fold the need for inclusive legislation, which was already a dire need. Disabled people were not considered when our society was designed, forcing us to navigate inaccessible and ableist spaces in-person and virtually. For example, there is a bookstore I enjoy here in Chicago. It had a cute, quirky storefront and an inaccessible entrance. The first time I went, being low-vision and partially blind, I tripped on its concrete steps.
The bookstore has since moved to a bigger location with an accessible entrance. Without the physical barrier of steps, not only are disabled people able to enter, but so are people with strollers and elderly people.
Businesses and nondisabled people have the power to make significant change in the lives of disabled people by considering our needs, even with seemingly small decisions — like making entryways and Zoom meetings accessible.
Writer and disability justice activist Mia Mingus says “access intimacy”—is that “elusive, hard to describe feeling when someone else ‘gets’ your access needs,” the “eerie comfort that your disabled self feels with someone on a purely access level.”
For me, access intimacy happens when my friends walk along the curb to stop me from getting hit by cars or people, because I have invisible physical disabilities and no assistive devices. I am blessed to have a group of friends who have literally pulled me out of harm’s way in public. They have advocated for me in spaces where people have tried to talk over me, and they’ve never seemed annoyed at accommodating me or correcting themselves or others.
The opposite of access intimacy is “access hostility.” Disability studies professor Ellen Samuels, citing Mingus, describes access hostility as “access grudgingly granted w/resentment, disbelief, demands for repeated explanations, proposals of alternate arrangements that never work. It can be even more toxic than access denied…[Access hos- tility] makes you doubt yourself, defend yourself, justify yourself over and over until access becomes pointless because it’s clear you are not wanted or welcome. It happens to every sick and disabled person.”
In my life, access hostility occurs when people say, “Well, you don’t look disabled to me. You went to graduate school and have a master’s — how could you be disabled?” The idea that disabled people don’t look a certain way is difficult for our society to understand — because it values nondisabled people’s comfort over disabled people’s realities.
Once, while I was sitting in the disabled section on a public transit bus in San Francisco, an elderly white man boarded and sat across from me. He immediately started yelling about how I wasn’t allowed to sit there because I wasn’t disabled. I said I was, and he demanded I show him proof — he wanted a card. I replied that I didn’t have to show him anything and that I wasn’t doing anything wrong. I could share other similar stories, but I bring up this example to demonstrate the labor it takes to hold space for myself while enduring racism and ableism from a stranger.
Racism and ableism also look like the person yelling “move” at me on the train platform, or the looks I receive at the grocery store when I accidentally bump into someone. Racism and ableism exacerbate rudeness through the assumption that I’m not entitled to be in a space.
See, many people who claim not to be ableist or racist will believe and listen to a disabled or a marginalized person — when it suits them. When it doesn’t, we bear the brunt of harm and harassment from those same people.
Many nondisabled people think they get to decide who sits in the disabled section on public transit, when and how to follow the Americans with Disabilities Act (ADA), and how and if disabled people receive support. They believe they can tell a disabled person what to do or how their disability “really” affects them.
It makes sense in a country where free speech is so fetishized that it’s often interpreted as license to act however a person wants (unless it breaks a law), even if that opinion or behavior is harmful or ableist. But what about my freedom to use public space? What use is “freedom” without inclusivity, when around 25 percent of people in this country are disabled?
I am thankful for the ADA, but I am disappointed that so few disability laws have been passed since its 1990 launch. We deserve more. I’d like to see laws requiring all restaurants and businesses to widen their entrances for wheelchair access and have ramps alongside stairs. I’d like laws to make it easier and faster to obtain disability passes for public transit (when I tried to get a pass as a student, it was such a terrible experience that I haven’t bothered to try it again). I’d love laws to require businesses to have door-opening sensors at entrances (in addition to the push-button door openers) so people won’t have to physically struggle to enter a building.
The ADA was supposed to be a beginning, not a brick wall in the road to accessibility.
Disability justice and access can teach us how to live in spaces that thrive in inclusion. There is so much beauty in that.
Disabled people are some of the most imaginative people I’ve met — precisely because we are taught that what we need is, at times, impossible or “too much.” We interdependently think on our toes to fill in gaps that shouldn’t even exist. I was once in a Zoom meeting with other disabled people that didn’t have closed captions. Instead of saying, “Sorry, we’ll try to have them next time,” someone offered to take notes on the fly in a shared Google Doc so everyone could participate in the live event.
By contrast, ableist thinking is too often narrow and obtuse. For example, when I express frustrations about inaccessible sidewalks and someone tells me, “You just need to watch where you’re going,” they are missing the point. If I’m partially blind, how can I watch where I’m going?
When people take the time to provide access intimacy to others, we gain the opportunity to engage with the collective whole.
The radical changes of the pandemic have opened new discussions around access. Real accessibility — now and post-pandemic — would look like making hybrid events available, including hybrid conferences and classes. Hybrid, meaning an in-person event with an accessible virtual attendance option. The pre-pandemic standard for employees to work in-office was ableist, so it’s been gratifying to see some employers begin to understand that disabled people working from home is a disability justice issue.
When I think of how disability rights tie into ableism and racism, I think of how many people find comfort inside the cage of their “freedoms,” how they protect ideals that restrict them. Both ableism and racism restrict people from expanding their worldview and growing in their understanding of others. Both make people closed-minded and cause people to live in false comfort.
Ableism restricts the mind in its imagination and what is collectively possible (individually, locally, nationally, globally). It gives power to social norms that must be challenged. Being disabled isn’t what hinders me; what hinders me are those so-called freedoms that are used to control disabled people — and, by extension, nondisabled people.
I do not want to be seen and engaged with as an object, assumed to be absent from myself, incapable of decision-making or disconnected from others because I am disabled. I want my body to be seen as alive, lived in by me. I want to be respected because I am a human being.
I want disabled people to be treated as human beings — because we are.
Disabled people can make this society better, are making it better and are integral to a truly thriving society. May we all commit to a better imagination.
A.A. VINCENT is a Black disabled writer and editor from Chicago.