By KENDRA SITTON | Uptown News
As California phases into its reopening plan, it comes with a major caveat: all people over 65 and any person under age 65 who are immunocompromised are legally required to continue to self-isolate. All seniors, no matter their health situation, are being asked to shelter in place.
The majority of young and middle-aged people are welcomed to shop, eat at restaurants and engage in social behaviors with relatively low levels of risk. However, not all young people can do this because of pre-existing conditions. Many among the nation’s 26% disabled and chronically ill are not elderly or middle-age, leading to gaps in professional, social and medical support.
There is some shared commonality and solidarity in varying health directives and support that seniors are given. Some seniors are still working and cannot isolate while others get to choose whether and how to reengage society.
By contrast, the divide between chronically ill and disabled young adults and their healthy counterparts has never been starker.
“I’ve been more acutely aware of my disability and my immunocompromised state… I’ve been more aware of my autoimmune diseases than I think I ever have before,” said Bailey Brawner, a 26-year-old pastor in Mission Hills.
Diagnosed with Lupus and other autoimmune disorders as a teen, Brawner has known her condition is life-threatening. She said COVID-19 experiences have made her feel as though a spotlight is being put on her as an immunocompromised person, intensifying her precarious situation.
Brawner’s disability and related conditions are also invisible — which causes other issues. She was met with dirty looks when she used an early-morning shopping hour designated for seniors and immunocompromised people, even after she called the store ahead of time. Sometimes she explained her diagnoses, yet people rolled their eyes and tried to stop her from shopping.
It was a trip she normally may not have taken because of the lifting and carrying involved, but she was forced to when grocery delivery apps were overburdened.
As restrictions ease, Brawner is anxious about people reopening too quickly and too much.
“I’m worrying that I can’t keep up with the changes that are being made simply because of something that I can’t control about my own health and the risk that’s associated with it,” Brawner said.
For chronically ill and disabled non-elderly adults, the disparities between them and their non-disabled adult peers has always existed because of societal ableism and accessibility barriers – people are just paying attention to it now.
“There’s already a lot in our society that excludes those with disabilities and health concerns,” said Anne. [Editor’s note: A pseudonym is being used to protect privacy.]
She faces the difficult prospect of looking for a job during the worst economic downturn the United States has ever seen. Although it is medically safer for her to work from home, financially she will need to take whatever job is available.
In addition to financial and health concerns, she fears the “reopen” protesters who are not following guidelines meant to reduce the spread of COVID-19 infections and deaths.
“This shouldn’t be a politicized issue,” the Downtown resident said. “This is my life you are politicizing.”
The divide between able-bodied and disabled people are widely shared on social media.
Enrique Ramirez, a disabled Logan Heights resident, said it is particularly difficult to see people complaining about staying inside for a few months when this has been their reality for a lot longer given mobility issues.
“I see the privilege that comes along with that. [It] just kind of makes me even more aware of my unfortunate circumstance,” Ramirez said. “I just feel really disconnected from the world.”
Reopening may not appear to have a major effect on them as their life has looked seems mostly the same before, during and after shelter-in-place.
But Ramirez also knows that some of the extra support they have received during the pandemic will soon disappear. They rely on mutual aid networks for rides to and from medical appointments.
As many volunteers head back to work, Ramirez will need to go back to using public transit and risk exposures to more people.
The pandemic has heightened Ramirez’ anxiety and mental health issues. They have been spending so little time outside that his doctors have boosted his Vitamin D supplement.
“I find myself really scared of leaving my house now,” they said.
While COVID-19 has left some immunocompromised people more isolated and struggling than ever before, it also increased accessibility in other ways.
Changes that disability justice advocates have fought for decades for have been made quickly in some cases, such as widespread work-from-home movement and immediate returns to medically necessary and sanitary plastic straws and single-use utensils.
For those who can’t drive or are out of range of public transit, social and professional moves to virtual spaces — everything from concerts to legislative meetings — has made many realize how accessible our world could have been prior to the pandemic. Many hope these changes remain.
Mason, who uses the neopronoun xie, started taking part in a non-binary support group. If that group returns to in-person meetings, xie will not be able to attend. Xie is doing more activities even as xie is leaving the house less.
“What’s been interesting about this crisis is that it’s given me the opportunity to do things from home on my computer,” Mason said.
Conferences and meetings are livestreamed now after claiming it was too technically, socially or financially difficult to do so in the past. Companies with previous policies claiming it was necessary to come into the office are letting all employees work from home.
The shift doesn’t just open doors to needless long-term historical employment bias, many medical appointments are finally virtual, critical for less-mobile disabled and chronically ill patients who can access better and more frequent medical care in safer home environments.
These virtual options prove that many of those places could have accommodated disabled people all along.
“It’s unfortunate that it wasn’t until able-bodied people needed to be able to use these things that it finally got done,” said Kay Marie, a disabled City Heights resident.
In other ways, she said, “accessibility has gone out the window” for deaf and hard of hearing communities. Kay Marie worked in audiology but is not deaf or hard of hearing herself. She knows her patients are struggling because many social media and web sites lack automatic video captioning. Sign language interpreters are missing from concerts as well as government and public health meetings.
Other disabled people have lost accessibility as well. People with partial or total vision loss struggle with non-accessible websites, apps and systems. This is hard enough socially, but frustrating during hiring, unemployment and voting processes. Online-only environments can be a struggle for neurodiverse people with conditions such as autism or ADHD. In addition, masks have made navigating the world more difficult for people who depend on lip reading or face-to-face focus. Masks are also a struggle for people with autism, people with facial conditions, people with allergy disorders, people using ventilators and others.
The COVID-19 pandemic came at a terrible time for Kay Marie. After two years in and out of the hospital while facing an autoimmune disorder, she was stable enough to begin reintegrating into her life.
But after just eight days at her former job, her doctor told her she needed to quarantine for the foreseeable future. Kay Marie fought for years to get to that place in her career field, so needing to take medical leave again after just restarting was devastating.
Like many immunocompromised people, the precautions taken during the coronavirus pandemic, like wearing masks, washing hands, wiping down surfaces, were already a part of her daily life, although she has “stepped it up” a notch to prevent infection.
Kay Marie found new joy in community organizing, but said there should be better plans for immunocompromised people who need to isolate to find virtual work.
“A lot of us have skills, a lot of us have knowledge that even could be repurposed for something else,” Kay Marie said. “I have a doctorate! I’m sitting at home right now.”
She is frustrated that many people do not realize that the pandemic will not end on June 1 and is concerned she and others will be left behind.
“There hasn’t been any provision made for people like me who are young, who are chronically ill or disabled, and who are immunocompromised,” Kay Marie said. “There’s thousands of us, probably millions of us in the United States. It’s like you’re just leaving this whole section of the population to figure it out on our own. And that’s not right.”
With no official government guidance, when and how immunocompromised people can see their friends and family again is a matter of trust.
Brawner plans to see people who she knows have been quarantining safely for two weeks. Difficult decisions have to be made regarding people who are not taking the pandemic seriously, as even well-meaning non-disabled people could unthinkingly endanger loved one’s lives.
Mason and xie’s parents have kept xie’s sister from visiting because she has continued to go to parties and engage in other high-risk behavior during self-isolation. Xie may not see her again for a long time.
However, Mason began seeing people who are carefully quarantining. After months apart, xie had a socially-distanced date with xie’s significant other, who is severely immunocompromised, last week. The couple brought bottles of champagne for a picnic outside while wearing masks and seated far from each other. Mason’s family intensely prepared for the visit with cleaning and disinfecting everywhere. The pair were still not able to touch, but this was the closest they had been in months.
— Kendra Sitton can be reached at email@example.com.