A world not built for me — until now?

Wit­ness­ing the Impact: What will post-pan­dem­ic life be like for dis­abled people?

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6 minute read
Katie Samson, a white woman, is outdoors with a group of about 6 smiling people. She uses a wheelchair & wears a blue hat
Katie Samson (center) at the 2021 Philadelphia Flower Show for Art-Reach's first in-person Encore program since the pandemic, with audio describer Nicole Sardella, Art-Reach colleagues, and flower/plant lovers from the blind/low-vision community. Photo by Ashley Smith/Wide Eyed Studios.

As pandemic restrictions ease, I’ve been thinking a lot about Bob—Bob Wiley, played by Bill Murray in the 1991 Frank Oz film What About Bob? (If you're not familiar, Murray plays a reclusive man who becomes dependent on his therapist; witty, endearing chaos and dark humor follow.) It was one of my grandmother’s favorite movies: an iconic comedic role for Murray. And yes, watching through the lens of a disabled self-advocate, it is offensive and perpetuates grossly exaggerated stereotypes about disability and mental health. But Bob has been on my mind in relation to the Covid era, and how the arts and culture sector will operate this summer and fall, and in the coming year.

The advice Bob receives in his first session with psychiatrist Dr. Leo Marvin (Richard Dreyfus) is “baby steps.” This is the way I have begun re-emergence, as a disabled audience member within the cultural landscape of Philadelphia. As a quadriplegic who hasn’t taken a literal step in more than 21 years, the irony of using this ableist metaphor is not lost on me. But how else can I express and share the hesitation I have each and every time I consider new and inviting options for performances, museums, public gardens, and historic sites?

Dropping my guard

A few weeks after receiving my second dose of the Covid-19 vaccine in late April 2021, I felt torn in two very different directions. There were many people and many things I could not wait to see and do and yet, I was afraid of what the world would be like. My first post-vaccine outing to a popular retail clothing store substantiated my fears, but in a way I had not expected.

The accessible parking space was blocked by a van unloading boxes. The accessible ramp I needed to take from one part of the store to the other was blocked entirely by ladders and equipment. The roped aisles at checkout, marked for social distancing, did not accommodate my wheelchair. But the most difficult part was not the physical inaccessibility. It was trying to communicate over loud music playing throughout the store, and through plexiglass at the cashier and masks over our faces. The signs could have said “Welcome Back…except you.”

I was spoiled in some ways during quarantine: being hard-of-hearing, the benefits of hearing devices, closed captioning, and a quiet environment in my own bubble offered ease and comfort. In my rush to “get out” and experience the world again, I forgot to keep my guard up. Despite the fact that they had not seen me at that store in over a year, I expected the people working there would remember that I still existed. I hoped for a more accessible landscape than what I first received.

Everyday isolation

As a quadriplegic who is also hard-of-hearing, I understand the world was not built with me in mind. The complex day-to-day challenges in the Before-Covid Era (BCE) could arise at 6:10am, when my personal care attendant might have woken me up 10 minutes late. Perhaps my accessible vehicle malfunctioned, or a sudden weather system caused me extreme symptoms of dizziness and tinnitus. In the disabled community, we live with these challenges every day, some days more than others.

During the Covid Era (CE), a person like myself may have felt slightly liberated from the demands that family, job, and life put on disabled people—the “fake it till you make it” motto, in hindsight, is one of the most ableist phrases ever to exist. The disabled community understands isolation better than anyone, so when the cultural sector around the world pivoted to streaming, telephonic, and even snail-mail programs, we were pleased.

I won’t regale you with all the virtual activities I tried to pass the time, but work helped. I am the director of education for Art-Reach, a Philadelphia-based service organization that creates, advocates for, and expands opportunities in the arts for underrepresented communities. Especially during the pandemic, my colleagues and I have spoken with many people with and without disabilities who work in the arts.

The signs could have said “Welcome Back…except you.”

Changing questions

Advocating for accessible virtual experiences is not easy, but for the first three months of the shutdown, we zoomed with anyone who would listen. Questions we asked included, “Do all those beautiful images of museum objects on your website have embedded alt-text so they are screen-reader friendly for someone who is blind or low-vision?” or “Have you audio-described all those great virtual audio tours?” or “You know that amazing performance you put on YouTube? Could you throw some closed captions on there for the 15 million people in the United States who are deaf or hard-of-hearing?” We also asked, “Would you consider adapting your program for neurodiverse children who would love to participate, but can’t sustain too much screen time?” We listened to the disabled community and tried our best to voice those concerns to the arts and culture sector. Training and professional development accelerated, and we felt the momentum shift.

What impressed me most was CE arts and culture leaders’ patience, creativity, and openness to changing their thinking around access and inclusion. Art-Reach started to receive questions not only pertaining to compliance-based Title III accommodations required by the Americans with Disabilities Act, but also inclusive, design-based inquiries regarding intersectionality and BIPOC representation in accessible service providers. Creatives coming from the visual arts, dance, and theater worlds in Philadelphia were bringing in communities to build projects, programs, and spaces. If we learned anything during the pandemic, it is that when people feel included, they are more likely to buy into what they create. This happened with interest-based learning in K-12 and medical schools, and on TikTok and other social-media platforms.

Healing through the arts

The largest marginalized group in the United States (which is also the only marginalized group that any person can join at any time) is telling anyone who will listen that we don’t want to go “back to normal.” When it comes to CE accessibility, the arts and culture sector must also contend with reduced staff and budgets, physical distancing, proper hygiene with lending materials, flexible and adaptable platforms, and rebuilding relationships. I believe in the renaissance that’s coming, but whatever renaissance comes must be accessible, iterative, and affordable.

We have a lot of healing to do, and the arts are our booster shot. I am managing my expectations, and so should the arts sector: we may not all return this summer. I have seen some live music, outside, with noise-canceling headphones. I have visited public gardens that have improved the access information on their websites. I’m excited to purchase an Art-Reach ACCESS Card and visit 12 new partner sites in northern Delaware. I’m catching some outdoor theater, and hope to visit some museums during the dog days of summer, but I’m not in a rush. Baby steps! I’m getting a new motorized wheelchair next week, complete with lights, a horn, and an elevated seat. When I’m comfortable and feel that my cultural spaces are comfortable, I’ll cozy up elbow-to-elbow with you in a darkened theater. Let’s just hope they install that loop system I recommended—another small but important step.

This article was supported through a collaboration with the Institute on Disabilities at Temple University and research funded by the Waterhouse Family Institute for the Study of Communication and Society. You can read more stories at www.temple.edu/instituteondisabilities/we-will-talk, made possible with generous support from the Independence Public Media Foundation.

What, When, Where

Read more about BSR’s partnership with Witnessing the Impact. And visit a sister project, We Will Talk About These Days, for a variety of interviews by and with disabled people about life in the pandemic, free to access online.

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