Belo Cipriani vividly remembers the three days he had a fever of 102 degrees after contracting the H1N1 virus, or swine flu, back in 2009 while living in San Francisco. Legally blind, he likely touched a staircase railing or other surface in a public space and didn't wash his hands soon enough to prevent becoming sick.
Now living in Minneapolis with his husband, James Kirwin, 37, who has partial sight, Cipriani quickly became alarmed when he first heard news reports about the novel coronavirus outbreak in China. His worries grew when he found out there were nearly a dozen Minnesotans stranded on the Grand Princess cruise ship docked off San Francisco's coast due to several crew members and a few passengers testing positive for the virus.
"I thought it is going to come here, so I decided to start early," said Cipriani, 39, who began sheltering in place in early March, weeks before others in his state were ordered to do so. "For me, especially, I am completely blind and I need to touch things. It is one of the things I feel about my specific disability for why I am more vulnerable. I need to touch things to get around. James has some sight but he has to touch things to make sure things are there."
The couple is lucky that they have family members in the area to run errands for them if needed. And Cipriani joked the couple normally over-buys at the store to limit their need to shop, so when they heard about the run on toilet paper, their reaction was at least they were stocked up on the bathroom necessity.
"We are pretty prepared. One thing about having a disability, we buy in bulk because we can't always go to the store," said Cipriani. "I feel like this may sound dramatic, but my husband and I are both blind, so we tend to stock up for three to four months at a time. We do a have big pantry."
San Francisco resident John Marble, a gay man who is autistic, was fairly certain he had contracted the coronavirus last month as he celebrated his 43rd birthday while severely ill. After he noticed a loss of taste, Marble started getting headaches and having digestive issues followed by difficulty breathing.
"I felt winded doing anything. For about two weeks all I was doing was sleeping," recalled Marble, who in consultation with his doctor opted not to get tested and remained at home. "My official diagnosis was highly probable."
More than a decade ago Marble had worked on the H1N1, and to a lesser extent, the Ebola responses for the Obama administration. He also worked on the administration's continuity of government preparations in case of pandemics or other disruptions. Those experiences guided him on his decision not to immediately get tested for the coronavirus, so as not to pass it on to his health care providers.
"I am doing fine and a lot better. I have my energy back and feel good," Marble said last week. "The truth is my breathing capacity is just not the same. I am feeling better but I still get winded. I have heavy breathing and that is a scary feeling."
A few days after Marble spoke to the Bay Area Reporter, he ended up going to the emergency room and did get tested. After returning home, he received a phone call from a public health investigator confirming he had COVID-19, the respiratory illness caused by the virus. It brought Marble a bit of relief, as not knowing for sure what caused him to be so ill had been stressful.
"I am autistic and one thing that helps autistic people is certainty," noted Marble.
Lives upended
The lives of people with disabilities have been upended in countless ways by the global pandemic. Similar to the LGBT community, the disability community is diverse and requires different services and levels of assistance. Obeying the shelter-in-place orders can be a challenge for people who are disabled.
"It is not easy for us to shelter in place because groceries need to be picked up, which requires transportation, but public transportation in many places is shut down. There's just a lot of ways this situation is affecting the disability community," said Ben Spangenberg, the national leadership program director for RespectAbility, a nonprofit that advocates for the needs of people with disabilities.
Spangenberg, 38, has remained at home with his husband, Justin Chappel, in Silver Springs, Maryland since March 12. They both use wheelchairs, and even though they live near a grocery store, the couple is opting not to venture outside for the time being.
"It is rough. I like to get out and have fresh air and can't do that right now," said Spangenberg. "It is challenging finding essential needs, like waiting two weeks to get a bottle of laundry detergent, and not being able to go over to the grocery store even though it is literally across the street from us. Having that fear of catching something crossing the street is not fun."
They are also leaving all packages of nonperishable items delivered to the door of their unit outside in the hallway for 48 to 72 hours as an added precaution against the virus.
"My husband and I get our meals from delivery meal kits so that is a nice consolation for people with disabilities," said Spangenberg, who grew up in the Bay Area and on the Monterey Peninsula and moved to the D.C. region two years after graduating from UC Berkeley in 2005. "We've tried to stock up on nonperishable stuff so we are good for eight weeks. Hopefully, this isn't going to last more than eight weeks."
While the couple continues to work, Spangenberg said a main concern during the crisis within the disability community is unemployment. Disabled people already face barriers to employment and many work in industries considered to be nonessential businesses. Seven out of 10 of the 56 million working age Americans with disabilities do not have jobs because they can't get hired or gave up looking for work.
"Oftentimes, people with disabilities are the last hired and the first fired," he noted. "When people are being laid off oftentimes people with disabilities are laid off first, so that has been a big effect."
They also may be unable to continue working because their disability or underlying health issues put them at greater risk for contracting COVID-19.
"Obviously, the virus is more virulent for people with lung issues and immunosuppressant folks," said Spangenberg, who was born with spina bifida, a birth defect that results from the spine and spinal cord forming irregularly.
Another issue is if a person with a disability has a personal care attendant, someone who comes to their home to help them with such things as going to the bathroom or bathing. Employing such a person could put them at risk for the virus, yet suspending such care for the time being isn't really an option for some people with disabilities who live alone.
"There is going to have to be a lot of intentional decision-making in how people with disabilities can continue to get the services in case personal attendant care is discontinued, either by the agency that provides it or if it is an independent person," said Spangenberg. "That's going to impact many, many people. You need to still use the restroom, you still need to take a shower, and all of those services are going to be important."
And should a person with a disability need to be hospitalized, there is a likelihood they could be denied care if the hospital is overwhelmed with patients and running low on supplies such as ventilators. Even under normal circumstances, Marble noted, there is a tendency to deny people with disabilities the medical care they need.
"What officials need to be enforcing is a first-come, first-served policy at hospitals," he said. "Often, public policy is if a disabled person goes to the hospital at a time like this, they might be denied services because disabled persons are seen by society as being disposable."
He pointed to state directives that say not to resuscitate disabled people in order to save on medical supplies. Alabama, for example, says, "persons with severe mental retardation, advanced dementia, or severe traumatic brain injury may be poor candidates for ventilator support," as ProPublica recently reported.
Government response
Such triage policies have alarmed disability rights advocates, while federal officials with U.S. Department of Health and Human Services told the news organization they opposed rationing care for people with any kind of disability.
"Persons with disabilities should not be put at the end of the line for health services based on stereotypes or discrimination, especially during emergencies. Our civil rights laws protect the equal dignity of every human being from ruthless utilitarianism," Roger Severino, the director of the federal agency's civil rights office, told the news site.
Alex Locust, 29, a queer man who lives near Precita Park in San Francisco, founded the website https://www.glamputee.com/ to advocate for and provide resources to others with disabilities. Locust lost his left leg above the knee to amputation after it didn't develop normally when he was a child.
As an advocate for other people of color with disabilities, Locust said he is concerned that their unique needs may not get addressed. He signed on to and has been promoting the #NobodyisDisposable campaign that is demanding health officials create policies during the crisis that avoid triage and avoid discrimination in triage.
"Even here in San Francisco people with chronic illnesses and other conditions that require more medical attention will have people turning them away when they seek care. They are not deemed necessary to treat at the moment," said Locust. "I am thinking if somebody is black or brown or queer or older and how all these things can kind of come together and put people at particular risk. I don't think those things are being hashed out. Having to shelter in place may put them at more risk if they can't access certain things."
The city has taken steps to ensure people with disabilities are being taken care of during the crisis. There are roughly 94,000 residents who fall under the classifications for being a person with a disability.
The Department of Disability and Aging Services enhanced its Benefits and Resource Hub's helpline that connects seniors, people with disabilities, and caregivers to supportive resources. The DAS helpline at (415) 355-6700 now operates seven days per week from 8 a.m. to 5 p.m.
People can call the number if they need assistance with home care, delivery, or other essential tasks. People can also sign up to be matched with a volunteer for friendly check-ins through the helpline.
"I really want to make sure people with disabilities do utilize the DAS intake hotline," said Nicole Bohn, director of the Mayor's Office on Disability. "If they need any kind of additional support, even if they aren't previously connected to DAS programs, we want people to be calling that number and letting us know they need additional resources and support."
DAS also announced this month it is working with its nonprofit partners to prepare to train and hire up to 200 new home care providers to help older adults and people with disabilities live safely and independently in their communities during the stay home public health order.
The city has also been developing guidelines for caregivers of people with disabilities, noted Bohn. And while the Human Services Agency's In-Home Supportive Services two service centers are closed, the agency is working with clients over the phone or via email.
"We know people with disabilities will need continued support and care," she said. "We do anticipate there will be impacts from the virus on people with disabilities who previously had care support structures that might be changing now that people can't come in their home. It is definitely one of the issues DAS is looking at, and we are hoping through the volunteer program and IHHS we will be able to connect people to additional support."
Bohn has been working at the city's Emergency Operations Center several days a week assisting with the local efforts to address the crisis. Speaking to the B.A.R. last week, she said city officials were looking to host a community listening session virtually with the local disability community in April.
"The first thing I will say is this evolves every day, so we are really trying to make sure we have avenues to hear from people," said Bohn, a straight ally who has cerebral palsy and uses a wheelchair. "Some things we've heard so far are we want to make sure we have appropriate communication access specifically for the deaf and hard of hearing community. We are also working on improving access to information for folks who may not have access to the internet and they need to use a telephone or other methods of communication."
Concerns have been raised, said Bohn, about people being able to use public transportation and still be able to be physically distant from other passengers, so they are addressing that with their counterparts at Muni. The transit service announced last week that passengers now must board via the backdoor of its buses, except for passengers in wheelchairs or with other accessibility needs.
This week, the San Francisco Transportation Agency, which runs Muni, announced it was cutting 51 of Muni's 68 bus lines.
Bohn has also been working to ensure the information posted to the city's special website for information during the crisis — https://sf.gov/topics/coronavirus-covid-19 — is accessible to people with disabilities.
"I would direct people there for info," she said. "We are also encouraging people call our 311 employees with any questions."
Because of the shelter-in-place orders, the Mayor's Disability Council was unable to meet in March, said Stephen Herman, a gay man who was recently elected co-chair of the advisory group. He is working to ensure it can meet this month via online platforms, Herman told the B.A.R. last week.
"As co-chair of the council it is important for us to keep abreast of what is happening and give input from our community perspective," said Herman, 72, a longtime survivor of HIV who is now immune compromised. "The disabled community is always the last one to be thought about and given the least amount. For many, the disabled community doesn't exist."
Mayor London Breed appointed Herman to the disability council last year. An aide to former City College Chancellor Philip Day, Herman pleaded guilty in 2011 to two charges of spending college funds on political donations. The charges were later reduced to misdemeanors at sentencing, and Herman told the B.A.R. that his guilty plea had been expunged in 2012 with the support of the district attorney's office.
Herman previously served on a number of city advisory panels, including as chair of the AIDS Health Project Advisory Board, co-chair of the Ryan White CARE Council, and co-chair of the LGBTQ Advisory Committee to the Human Rights Commission, which he also served on.
To protect his own health, Herman is staying with relatives in Cloverdale for the time being and keeps in touch with Bohn and his fellow council members remotely. Addressing the multiple needs of the city's disability community is a challenge, he noted.
"The disabled community is a very complex community, it is not monolithic," Herman said. "You have all sorts of ... a whole spectrum of disability from mobility issues and sight issues to mental health issues, autism, and people in wheelchairs. It is not just one fix for all, so it is very complex when you have a situation like this to try to put all the pieces together to help the people who are in the community."
Even prior to the current crisis and the orders for people to remain home, Herman said isolation was a significant problem within the disability community. The council had been working to ensure that more people with disabilities were serving on various oversight panels in the city so that their voices were heard.
"We need more disability people at the table. Just like the AIDS epidemic forced us into more visible spots," said Herman, referring to the LGBT community. "It is hard for the disabled community to be active and to be activists because of their disabilities. It is often overlooked because of their needs."
San Francisco was already doing a better job than many other jurisdictions on addressing the needs of its disabled community prior to the pandemic, said Herman, so he is confident city officials will continue to do so during the current crisis.
"I think we are very lucky to be here in San Francisco because it is not like the rest of the country," he said. "You kind of live in a bubble here. There are services and people with the right mentality here to provide services to the under-privileged and those in need."
Disability organizations point to several provisions in the Coronavirus Aid, Relief, and Economic Security Act (CARES Act) Congress passed that will benefit people with disabilities. Although there are outstanding questions for what people with disabilities who are on Supplemental Security Income will need to do to receive their recovery checks, the $1,200 for eligible individuals and $2,400 for people who are married, plus $500 per dependent child, will be a one-time benefit, advocates noted.
Students with disabilities will also be able to take advantage of the $30 billion in Emergency Education Relief grants. There is also $955 million for Aging and Disability Services Programs, such as nutrition programs providing people with disabilities and older Americans with food deliveries as well as direct support for family caregivers, according to an analysis by RespectAbility.
The federal legislation includes $50 million for aging and disability resource centers across the country as well as $85 million for Centers for Independent Living. The bill also invests $15 million to support housing specifically for people with disabilities.
But the nonprofit argues additional programs for the disabled are needed in future legislation. Especially important is providing paid sick leave to family caregivers for people with disabilities should their personal care attendant become sick and they need a relative or friend to pitch in in the meantime.
"I am very pleased at what passed," said Spangenberg, stressing that his agency doesn't lobby lawmakers in Congress but does educate them about the needs of the disabled. "There is going to be a need for more, but in my personal capacity I would say I am pleased. I think it is a step in the right direction to provide small business loans and to provide additional unemployment benefits."
Key in developing any response to the crisis going forward, he said, is for local and federal policymakers to keep the needs of the disabled community front and center and to reach out to people with disabilities for their advice and suggestions.
"We talk about nothing about us without us," said Spangenberg. "All too often we talk about these issues with elected officials and their staff who will sit down and start thinking about ways to solve problems like these but they don't go to the people it affects the most. So really being intentional in reaching out to the disability community on all things that affect us is important."
Normal routines on hiatus
For many, their normal routines are now on hiatus. The college Cipriani teaches at closed its campus, so he had to move his lectures to an online platform. An author whose 2018 book "Firsts: Coming of Age Stories by People with Disabilities" was the gold medal winner in the nonfiction-anthology genre for the 2019 Readers' Favorite International Book Awards, Cipriani had to cancel a seven-stop book tour this spring.
This past Saturday, April 4, he was to appear at the San Diego Writer's Festival, but the organizers postponed the event to the fall. He also owns Oleb Media, which works with companies on how to reach consumers with disabilities, and rather than give in-person presentations is setting up video calls.
In terms of assisting other entrepreneurs like him, Cipriani said he is concerned that the government relief programs will not be accessible for people with disabilities.
"I feel whenever we go into crisis management mode, people with disabilities always are the first to be left out. Like when it comes to, for instance, a lot of information being produced in alternative formats for people with disabilities," said Cipriani, who penned the B.A.R. monthly column Seeing in the Dark about disability issues. "There's been little talk about disabled-owned businesses. That has a whole different level of needs."
Locust is a substance abuse counselor at the San Francisco AIDS Foundation's Stonewall Project. He has been working from home since mid-March, though it can be difficult reaching his clients who may not have access to video chat services.
"It is a challenge as people using drugs or experiencing homelessness may not have access to a computer," said Locust. "It makes it hard just getting them information on how to get remote services."
The Pennsylvania native moved to San Francisco six years ago for graduate school and decided to stay. He said he is lucky to live with four roommates willing to do most of the shopping for their household so that he doesn't have to leave the house most of the time.
"I do walk around the park, but I am trying to make minimal grocery trips," said Locust. "If I was living alone, I would be having an especially hard time. As a crutch user, carting large amounts of groceries is not feasible, and at this time, I can't make multiple trips to the store."
Nor does he want to order often from delivery services, said Locust, and potentially expose those workers to the virus.
"I don't want to put people at risk for my wellness," he said.
Marble, the founder of Pivot Neurodiversity, is a neurodiversity and autism employment expert. He is working again, from home, and last week conducted his first online class for autistic adults on how they can adapt to the workplace.
"Autistic people think differently. We view the world differently," he said. "We have to live in a world not designed for autistic people."
A key concern he has with autistic people having to shelter in place is they are not likely to seek out support, preferring instead to take care of things on their own. For people with autistic family members or friends, Marble stressed it is important to be specific when offering to help them with tasks or errands.
"The crucial thing with autistic people in your life is to reach out to them," he said. "Offer specific things to help. If someone were to ask me, 'Can I do anything for you?' I would say no. If they were to say, "Can I get groceries for you?' I will say yes."
Cipriani noted that there hasn't been as much attention to grocery stores setting up special shopping hours for people with disabilities, as there has been for seniors or people with compromised immune systems.
"A lot of them don't have hours for people with disabilities who need more time to get around or help with their bags. They are not mentioned," he said. "I think often it is assumed people with disabilities will be taken care of by their families. As we have learned in the LGBT community, not everyone has a family."
For more information about federal disability employment resources, visit https://www.dol.gov/odep/
To connect with people of color with disabilities in the Bay Area, visit https://www.facebook.com/disabilityjusticecultureclub/
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