Living with a disability during a pandemic

Editor’s note:  This story is being highlighted in ASU Now’s year in review. Read more top stories from 2020.

Editor’s note: While this article attempts to shed light on how the COVID-19 pandemic is affecting members of the disabled community, it is by no means intended to be comprehensive in representing everyone that includes.

Arizona State University sociologists agree: The COVID-19 pandemic has exposed a number of inequalities in our society related to race, gender, class, legal status and age. However, conspicuously missing from much of the media coverage on these issues are the stories of how the crisis is affecting the disabled community.

At ASU, the number of students registering with the Disability Resource Center has more than doubled in the last five years, with more than 5,600 students registered in 2019. However, at about 4% to 5% of the total population of students, that number is likely low; most statistics put the number of individuals who identify as someone with a disability in the United States at anywhere from 12% to 19%.

That’s a lot of stories going untold. And it can feel even more isolating when someone’s disability is “invisible,” something the Disability Resource Center recently addressed with the introduction of its Access Zone program, a series of training workshops designed to increase faculty and staff awareness of all disabilities, including invisible conditions like anxiety, dyslexia or autism.

Over the past couple of years, the number of students at ASU on the autism spectrum has increased from about 40 students to a couple hundred. College of Health Solutions Assistant Professor B. Blair Braden runs the Autism Brain Aging Laboratory at ASU and has been working with individuals with autism for about a decade. She said that one of the biggest ways the pandemic is likely affecting them is the disruption of their routine.

“Routine is very important to most autistic individuals,” she said. “It’s almost embedded in the diagnostic criteria. The theory is that it’s a coping strategy for managing anxiety. And right now, all of our routines have been completely turned upside down, which is hard enough for the average person, never mind someone who’s overall sense of well-being relies on it.”

Haley Tenore, a journalism and mass communication undergrad and president of the student club Autistics on Campus said when she found out campus was being closed for the rest of the spring semester, she began having panic attacks.

“I like school a lot because of the structure it gives me, and knowing exactly what I am doing every day of the week,” she said. “I remember when classes went online, I began struggling to wake up in time for my Zoom lectures and struggling to meet deadlines that I normally would remember.”

Tenore also reported having trouble maintaining social relationships during isolation, something Braden acknowledged is often another challenge for individuals with autism.

“The loss of social connection for a group who already struggles with social connection is probably going to have a big effect,” Braden said. “On the flip side, when you get into older autistic communities — teens and adults — a lot of them already have social networks established on the internet.”

That has been the case for W. P. Carey School of Business accounting senior and fellow Autistics on Campus member Ryan Arnold.

“I am currently Zooming with a bunch of friends and family members this week while I am off from school for the summer,” he told ASU Now in early May. Yet like Tenore, he said his level of anxiety has also increased over the uncertainty of the coronavirus situation.

According to Assistant Clinical Professor of psychology Matthew Meier, it’s not unusual for those who already experience anxiety and depression to be having an even harder time managing their conditions right now.

“If you already had anxiety or depression, this is really intensifying the symptoms,” Meier said. “If you’re already worried about germs, or tend to be worried about worst-case scenarios, then there’s so much fodder for you right now in the media and just in general. If you have depression and have struggled with isolation and lack of social connectedness or getting out of bed, it’s even worse for that as well. Because even if you do force yourself to get out of bed, there’s nowhere to go.”

He said two of the best things someone experiencing an increase in anxiety or depression can do are to try to stick to a routine and to reach out for help. Currently, Meier is supervising clinical psychology doctoral students who are providing telehealth to community members and students through ASU’s Clinical Psychology Center, a training facility for graduate students. It offers affordable services based on income, and students pay only $15 per session.

ASU student Adam SmithName changed to protect the student's identity, at his request. has experienced generalized anxiety for 10 years. When the pandemic took hold, he was in the process of completing two major papers and preparing for an exam. Immediately, he began to worry about his productivity, so he reached out to a counselor online.

“That has been really helpful,” he said. “Having someone to talk to about what productivity means during this pandemic. Maybe not doing something one day is productive because it can help you to become motivated again or just to relax. Self care is part of productivity.”

In addition to spikes in anxiety and depression in response to sudden crises, Meier said that psychologists also see spikes in intimate partner violence and substance use.

“In general, we know people use substances to cope with stress and anxiety, as well as to deal with boredom,” he said. “The majority of people can use recreationally and not have any problems. But when you don’t have to go to work the next day, it’s really easy to slowly increase your usage. In general, there’s enough structure in most people’s lives to correct that, but there’s such a lack of structure for everyone right now.”

But Meier feels that overall, the mental health field has done a good job of continuing to meet clients’ needs with the help of technology, and that includes resources available at ASU, such as Recovery Rising, which, along with a number of other tools provided by Live Well at ASU, have begun to offer programs via Zoom.

For some, though, technology doesn’t solve all their problems. ASU alumna Fernanda Navarrete has been deaf since she was 4 years old. Though she wears a cochlear implant that helps somewhat, she still struggles to hear well on the phone, and has missed messages about doctor appointments being rescheduled as a result.

School of International Letters and Cultures Lecturer Hannah Cheloha has worked as a sign language interpreter for 20 years and used to interpret classes for Navarrete when she was a student at Mesa Community College.

“I don’t want to speak for the deaf community, but one of the frustrations I’ve seen circulating on social media and online forums has to do with having a hard time understanding people wearing masks,” Cheloha said. “Sometimes people that are hearing aren’t very sympathetic about it.”

Navarrete confirmed that impression: “I do have trouble with lip reading and masks,” she said via email. “I just have to remind (people) to talk slow so I can completely understand.”

Cheloha suggested communicating via smartphone by typing out what you’re trying to say without having to remove your mask, or even just writing it on a piece of paper. And remember to be patient.

“I would say that there definitely needs to be more patience and understanding,” Navarrete agreed.

Another issue for the deaf community is captions. Navarrete has had trouble with YouTube videos specifically, as not all of them have captions. The same is sometimes true for local and national news media.

“Every single day there’s news coming out with new announcements and sometimes the captions are nonexistent or not accurate,” Cheloha said. “So people don’t have access to information that could be lifesaving. Also, interpreters at press conferences are sometimes too far in the background or off the screen completely.”

Similar issues exist in the blind community, as reported by The New Yorker in an April 28 article that relayed concerns about the tactile nature of a communication system such as Braille in a world where touch is suddenly taboo.

And then there are those with mobility issues, immunocompromised individuals and countless others whose daily struggles during this time are known only to them. Taking all this into consideration, ASU professors and linguists Matthew Prior and Patricia Friedrich argue we also need to be reflecting on our use of language when discussing these issues.

“Our conversations are full of language where we use difference and disability to raise some people up and put others down,” Prior said. “For example, we might say, ‘Are you deaf or something?’ to point out someone’s failure to understand … Often when people use such language, they do so metaphorically or figuratively, not literally or intending to mock people with physical and mental disabilities. Nevertheless, it always conveys negative meanings. And to those whose bodies, minds, identities and experiences are reduced to insults and jokes, ableist language is yet another reminder of the social stigma and invisibility they negotiate daily.”

Friedrich — who along with Associate Professor Theresa Devine and Professor Majia Nadesan, launched a new disabilities studies degree program last fall — encouraged empathy and innovation in the name of a more equitable outcome for everyone.

“Awareness of these challenges should cause us to ensure we take care of one another and try to create space and innovative ways of interaction,” she said.

Top photo courtesy of iStock

Resources

• Clinical Psychology Center
• Disability Resource Center
• Live Well at ASU
• ASU Health Services
• ASU Counseling Services