Bearing witness to the ableism embedded within the pandemic – Dr. Audra Buck-Coleman, Dr. Cheryl Fogle-Hatch and Robin Marquis

This is a reflection written by Dr. Audra Buck-Coleman, Dr. Cheryl Fogle-Hatch and Robin Marquis. Buck-Coleman is an Associate Professor and director of the Graphic Design program at the University of Maryland, College Park. Fogle-Hatch is the founder of MuseumSenses, a Baltimore-based advocacy studio that researches and develops multisensory experiences for galleries, museums and other cultural organizations. Marquis is a Baltimore-based artist, facilitator, disability activist and accessibility consultant. They currently serve as the Community Outreach Coordinator for Access Smithsonian, the central accessibility office for the Smithsonian Institution.

During the Fall 2019 and Spring 2020 semesters, Buck-Coleman’s students worked with Fogle-Hatch, Marquis and others from the disability community to create an exhibit entitled Redefine/ABLE: Challenging Inaccessibility. The following is an asynchronous conversation about society’s treatment of those with disabilities during the pandemic written for the series from The Bahá’í Chair for World Peace on Learning During the Covid-19 Pandemic.

ABC: The pandemic has imperiled so many, however it seems that the concerns of, and for the disability community have been largely under recognized. In an effort to mitigate this, let’s start by thinking back to when the Covid-19 restrictions began in March. What were your concerns in those first few days? 

CFH: First, I had the normal worries that everyone expressed about disease transmission, their health,  and all of the statistics about new cases, hospitalizations, deaths, etc. Then, I had concerns about the systems being set up that required sight to use, which was an issue for me because I happened to be blind. For example, the only way to get tested was via drive-through Covid-19 testing sites and banks were only serving drive-through customers. If you were unable to drive as I am, then you were locked out of these services. Banks have now expanded their services to accommodate non-drivers, but too many others have not. My wife, who is also blind, and I had discussions about being shut out by these new ableist norms.

RM: One of my concerns was how I needed to change my behaviors in terms of social distancing. What pushed me to take it seriously was my being part of the disability community, specifically those with chronic illness. We have a different understanding of interconnectedness and shared responsibility. Even though I don’t have a chronic illness, I know many people who do, and I heard from them how important it was to take quarantining seriously. Personally, for myself, I had the privilege to work from home, and so I quickly changed my working habits and advocated that my workplace do that as well.

Something else that concerned me was that it felt like huge portions of society were moving into the chronic illness space. Suddenly people were paying attention to and needing things that disabled folks relied on all of the time for survival—literally for survival— including grocery delivery, cleaning products and supposed “Covid-curing” medicines that others relied upon for other health reasons. People snatched up and hoarded these goods and services, and that had a huge negative impact on disabled people in ways that went largely unacknowledged.

Unfortunately, the broader society is more individualistic and seems to care only about and react to the pandemic in ways that directly impact them. This has been the case from the beginning. Too many people are not socially distancing or using masks or altering their movement to keep themselves and others safe. They are saying, “Oh, well, I probably won’t get it” or “It won’t affect me that badly.” It shows how little people value the lives of seniors and those with disabilities, not to mention the lives of care workers and other essential workers.

ABC: Ableism, the discrimination against those with disabilities, has existed for centuries, however the pandemic seems to have exacerbated these oppressive attitudes. As part of this project, we’ve written about some of these instances, and you’ve both mentioned some above. Are there other examples of ableism you would want to call attention to, perhaps instances that you are personally familiar with or that those less familiar with disability issues might not be as aware?

CFH: That’s a difficult question because there are so many instances. Responses to the pandemic focus on avoiding touching people and objects while social distancing, maintaining at least a separation of six feet from others. For someone who is blind, this requires a lot of concentration, and it can be difficult. Now that businesses and other public spaces have re-opened, this becomes even more of a concern. This essay details how stigmas about touch negatively affect one blind person, and I am glad that he published this.

I rely on my sense of hearing to determine the physical distance between myself and others, however this only works if I can hear someone walking or talking. If people are silent, I will not find them unless I tap their shoes with my white cane or bump them with my arm or shoulder as I pass them on the sidewalk. Either way, I will violate their “corona bubble” by entering their socially-distanced mandated six feet of personal space.

Now, people will have to talk to me before I get too close to them. Before the pandemic I noticed that people had varying levels of comfort with giving me verbal directions. Adding the stresses of a health emergency will make bridging this communication gap even more challenging.

I also worry about how easy it is for society to devalue people with disabilities, especially when it comes to health care rationing. During the pandemic there have been numerous news articles about how hospitals were considering whether to fully support coronavirus patients who were elderly or who have compromised health conditions. I try not to think of the scary possibility that if my wife or I get Covid-19, we could be denied care on the basis of our blindness, especially if there is a surge of patients and a limited supply of ICU beds, ventilators, or other necessary medical equipment.

More everyday concerns center on the large number of inaccessible websites that don’t work for a blind person using a screen reader, software that provides voice output when text is displayed on a computer, tablet or smartphone. There are so many concerns that a website was set up to document the ways websites fail to meet the needs of the blind.

For example, the Baltimore City council distributed a graphic by email with a list of local Covid-19 resources, but the link in the message was to a map. There was no text listing. My wife informed the council president of this on March 24, but she never got a reply. However, as of July 7, I found text for the locations of Covid-19 testing sites at the city website. It took me about 5 minutes to track down this information in a situation where I was healthy and calm. If we had an immediate need to get tested because we thought that we had been exposed, searching for the necessary information would have been stressful.

Inaccessible websites were a problem before the pandemic, but with post-pandemic responses moving everything online, inaccessible technology has an out-sized effect on my quality of life now.

RM: Cheryl talked about health care rationing, and there is a larger concern about how we describe health and those at risk. Further, so many of the underlying health conditions, comorbidity factors around high blood pressure, asthma and diabetes are directly related to environmental factors, which are directly related to racism and income inequality.

We can’t talk about disability identity or ableism or the disability community unless we are also talking about the lack of health care due to structural racism. This also connects disability, especially mental health, to police brutality and to Black folks. Estimates are that between one-third and up to 80% of people killed by police have a disability. And so there is a lack of attention and understanding about the intersectionality of those experiences. This obviously is a huge issue that deserves more space than we have here. The Harriet Tubman Collective’s response to the original Black Lives Matter platform not naming disability is a great place to start as are following voices such as Jamie Grace Alexander and Alice Wong’s Disability Visibility project. The intersectionality of disability and race is something that needs to be centered in current conversations about disability.

Another important aspect is the lack of acknowledgment of how the general population is relying upon resources, knowledge and survival tactics that were created by people with disabilities. Things such as mutual aid networks, care networks, how to survive isolation, how to make hand sanitizer from home ingredients, how to organize from home, how to organize from bed. These are all things that disabled people have been doing for so long. This is not an ownership thing, but rather that people with disabilities were and are not being turned to as the experts or the knowledge bearers during the pandemic. They are not leading the conversations despite having the expertise.

ABC: It seems there is much we are overlooking or not acknowledging about the needs of the disability community. My own awareness and understanding has increased tremendously over the course of this project. Without this deep dive into issues related to design, accessibility and disability, I don’t know that I would have recognized these ableist instances. At one point in the project, one of my students related that as she was telling her father about the project he said that he didn’t realize ableism existed. Later, when I typed “is ableism” into a Google search, the first three search completions were “a thing,” “illegal,” and “real.” It seems others are also trying to establish the validity of ableism, even 30 years after the passage of the Americans with Disabilities Act. Similarly, a two-word Google search—coronavirus crazy—yielded more than 660,000,000 hits. We have so little awareness or respect for words that should be limited to describing disabilities, and we as a society are using ableist language to describe the pandemic. Why do you think ableism is not better known and recognized?

CFH: I don’t think that most people are intentionally ableist, but there will always be exceptions. I think that most people don’t understand how they would cope if they became disabled and then they expect people with disabilities to be helpless and not to be active, contributing members of society. These misconceptions lead them to design systems (websites, services, buildings, etc.) that exclude us because they don’t think we can or will use them.

RM: Fear and capitalism fuel this. When the pandemic began and people began talking about Covid-19, they talked about who might be more likely to catch it: elders and people with chronic illnesses. Ableism and ageism enables people to draw distinctions between themselves and those more likely to catch the virus, and the lives of those more susceptible to Covid-19 are devalued in the process.

This ageism and ableism has its roots deep in capitalism, which has always devalued bodies and minds that can not produce for the state. This became so overt in the conversations of whether to save the economy and have these specific populations die or interrupt the economy and save thousands of lives. The fact that people in government were and still are prioritizing the economy over elders and disabled people is an atrocious display of ableism and ageism.

With this, what continues to be really worrisome is how disability is made completely invisible. Specifically, the language that people use erases disability, terms such as “pre-existing conditions,” or “underlying health conditions” to replace language that specifically names disability such as “immunocompromised” or “chronic illness”. This language gave the greater population a sense of relief in that they can convince themselves that they are less likely to contract Covid-19 because they are not disabled or elderly. We the disabled are seen as the ultimate fear in this moment. That is fundamentally ableist. Why is there that fear? Because of the constant devaluing and disposability of our lives demonstrated so blatantly right now.

ABC: There are so many negative repercussions of the pandemic on the disability community, but have you noticed positive aspects about how neighbors, politicians or others have responded?

CFH: Personally, I have been pleasantly surprised by the high level of customer service of local businesses that remained open, even constrained by the new norms. For example, there’s a locally-owned grocery store two blocks away and we walked there with our shopping cart in March and April when we couldn’t get delivery reservations from the bigger companies like Giant and Safeway. The store employees were still friendly, and the only modification to the way that they helped me shop was that they directed me verbally instead of picking out items. They would say things such as, “The chicken is in front of you.” or “There’s no ground beef today.”

RM: On a macro level there has been a huge jolt of empathy into people. Their relationships to and understanding of their bodies and health and wellness and isolation have changed dramatically. In many ways these changes mirror the lives of people with disabilities. We’re suddenly having to think about this on a global scale, in ways that disabled people have always had to think about.

I’ve also noticed how people are connecting to mutual aid networks. They are realizing they can’t rely on the state to support their needs, and so they are working together on a micro level in incredibly inspiring ways. We’re also making accommodations and having more understanding for people’s needs during the pandemic. Because we are all going through it, there is more empathy and understanding that we can’t do this alone. No, we are not all right, and there is less shame in that. There is a distinct possibility that this can turn into a long-standing commitment to more expansive accommodations post-pandemic. Further, if the connection is made to the disability community, people will have much more compassion and interest in fighting ableism because they have gotten a taste of disability during the coronavirus outbreak.

ABC: This blog series title prompts me to consider what we have learned during the pandemic, and I would say one of the biggest things is that we now know that remote is possible. In the past, members of the disability community have asked for online work and school accommodations but had been denied because we thought they were not feasible. Now we know that they are. This is not to say that this virtual space is perfect. There is certainly much room for improvement, however for those with disabilities, it shows that the world can meet them where they are. What are other things you would add to this list?

CFH: I have been mostly working from my home office for several years. There are benefits to everyone being in that situation now. Before the pandemic, I could afford to travel to one professional conference per year. Once Covid-19 hit, many conferences switched to an online format, which meant that I could attend and participate in the one I had already committed to as well as two more. I was no longer constrained by travel costs, either the obvious financial costs, or the emotional costs, such as finding rooms or asking people to identify a presenter because I can’t read their name tag or recognize a face in a crowd. However, in a virtual event, it’s easy to connect electronically. An important conversation topic at all three conferences was the need to rebuild these events post-pandemic to be more equitable and inclusive without back-sliding into old ableist systems.

I have also been on informal Zoom calls with people with disabilities where we think out loud about ways we can support each other as we cope with adapting to the new normal. For example, someone said that she wears disposable gloves so that she doesn’t worry about touching door handles, bus fare boxes, handrails on stairs etc. When she gets home, she discards the gloves and washes her hands. The local chapters of the National Federation of the Blind moved their meetings to Zoom, and these calls allow us to easily share resources and swap Covid-19 work-arounds.

RM: My community’s, my colleagues’ and my own commitment to accessibility have blossomed, mainly because the pandemic has constrained and impacted us in new ways. We are committing to learning and doing better in terms of virtual accessibility. For example, I did a lot to learn how to create accessible virtual events. I had never done it myself before nor had institutional support to learn about it. If someone has the privilege to be connected to the internet, they can now connect to education, art, cultural experiences, celebrations, family and more.

In another example, I took a course on curatorial practice and disability from a curator named Sean Lee who is based in Toronto. The school is based in Berlin, and the students were located around the world. We were able to connect around disability on a global scale as well as focus on our own individual communities. It was educational and restorative.

More broadly, our fundamental ideas of education and resource sharing are forever changed to be more accessible. Museums have released collections online, and performances that would have cost hundreds of dollars to attend are now available to stream for free. Cheryl described the reduced costs of professional events. We now have an understanding for how this affordability—financial, emotional, educational—extends to museums and cultural spaces as well.

Redefine/ABLE: Challenging Inaccessibility is an online social media exhibit that addresses diversity, inclusion and ableism and seeks to engage audiences about the successes and challenges of persons with disabilities in Maryland and beyond. It was created by University of Maryland, College Park design students and members of the disability community. Find out more at http://redefine-able.thepealecenter.org.

You can view Dr. Buck-Coleman’s lecture for the Bahá’í Chair here. 

About the Authors: 

Dr. Audra Buck Coleman is an Associate Professor and director of the Graphic Design program at the University of Maryland, College Park. She has written, art directed, curated, designed, authored, directed, and collaborated on numerous design projects including Sticks + Stones, an international multi-university collaborative graphic design project that investigates stereotyping and social issues.

Dr. Cheryl Fogle-Hatch is the founder of MuseumSenses, a Baltimore-based advocacy studio that researches and develops multisensory experiences for galleries, museums and other cultural organizations.

 

 

Robin Marquis is a Baltimore-based artist, facilitator, disability activist and accessibility consultant. They currently serve as the Community Outreach Coordinator for Access Smithsonian, the central accessibility office for the Smithsonian Institution.