California power shutoff: how PG&E's actions hit the medically vulnerable the hardest

Deanne Mediati learned of northern California’s massive power shutoff when her husband shook her awake at 3:30 in the morning on Wednesday. “Honey, the power is out,” he told her. “You’re not breathing.”

Mediati, 59, has hypoxia and requires an oxygen concentrator to breathe when she sleeps. Like everything else running on electricity in 600,000 Californian homes and businesses this week, her oxygen concentrator stopped working when the country’s largest utility company cut power to an unprecedented swath of the state as a preventive measure against wildfires.

In a state gripped by climate crisis, where the biggest utility was found at fault in two of the deadliest wildfires in recent history, these preventive shutoffs are set to become the new normal. But the impacts of these power cuts are being disproportionately borne by the physically vulnerable, disability rights advocates said.

Related: California wildfire spreads as fears mount over further power shutoffs

And for Californians like Mediati who rely on electronic medical devices, access to electricity is a matter of life or death.

“I had to be woken up because I stopped breathing,” Mediati said. “I could have died.”

In the latest shutoff in northern California, Pacific Gas and Electric (PG&E) cut the power to portions of 34 of the state’s 58 counties on Wednesday, a move that affects more than 1.5 million people. Of those affected, more than 30,000 are part of a medical baseline program, meaning they have special energy needs due to qualifying medical conditions.

These energy needs range from motorized wheelchairs, ventilators, dialysis machines, apnea monitors, electrostatic nebulizers to respirators – all of which require power to operate. In the aftermath of the shutdown, people dependent on these devices were scrambling to find alternative power sources, places to charge them or other ways to get through what was originally slated to be up to five to seven days of no electricity.

Beyond medical baseline customers, an unknown number of other affected Californians may be medically fragile and dependent on electricity in other ways. Rebecca Fortelka, who has cerebral palsy and a connective tissue disorder, is “heavily reliant” on electricity, not just because of her power wheelchair, but because the air cleaning system she has to run continuously to keep her environmental allergies from flaring up.

“I also have medication that needs to refrigerated at all times due to DVT and blood clots,” said Fortelka, 30. “I also am on a special diet because of food allergies and autoimmune conditions so that food is expensive, and if it spoils due to power outage that is huge blow to me financially.”

Fortelka, who lives in Livermore, an inland city east of San Francisco, has been without power for 48 hours. Though PG&E sent an email to medical baseline customers stating that it “will be calling, texting and emailing you” to alert about power shutdowns, both Fortelka and Mediati said they didn’t get any prior warning. “My mom went to our local PG&E office and was told we have to fend for ourselves because medical baseline doesn’t count in this situation,” she said.

Mediati kept hearing about the possibility of a shutoff, but received no confirmation of one happening – and with previous shutoffs bypassing her area in Grass Valley, just outside Tahoe national forest, she and her husband were not prepared.

“I just thought it was going to pass us by,” she said. “I was up in the middle of the night scrambling for another hose for my emergency oxygen tank so I could go back to sleep. It’s just crazy.”

PG&E set up community resource centers that had power, but for the medically fragile, getting to those places can be more dangerous than staying home. Fortelka and her family had to purchase a generator, which cost $10,000 – and costs $1,000 to $1,200 to run each day on diesel fuel.

“There’s kind of this myth that disasters affect everyone and they’re this great equalizer and that’s just absolutely not true,” said Samantha Montano, an assistant professor of emergency management and disaster science at the University of Nebraska Omaha. “We tend to see different groups of people who bear the brunt of those impacts and struggle to find the resources to address those impacts.”

In the case of the shutoffs, people with disabilities and lower income suffered the most, Montano said. PG&E has offered no recourse to these customers, refusing to reimburse them for generators, alternative accommodations or spoiled medications.

“I do think that this kind of thing is criminal,” said Stacey Milbern, a disability rights advocate. “It feels like neglect.”

Milbern, 32, has muscular dystrophy and uses a ventilator to breathe and an electric wheelchair for mobility. She was in the shutoff zone, but as of Thursday, had not lost power.

Though she’s a medical baseline customer, she never heard from PG&E. After waiting on the phone for two hours and 20 minutes to learn that the utility wasn’t going to help her, she began reaching out to others in the disabled community.

Within hours, Milbern and others in the Bay Area disabilities community were able to set up a shared document where people who needed help could ask for help, and people with resources could respond in kind.

Some people needed housing. Some people needed items brought to them because they couldn’t leave their house. Some people needed a place to refrigerate their medication. “We matched the need with the people with the resources,” Milbern said.

In addition, through the Disability Justice Culture Club, the community raised $3,000 toward buying a generator, so that they could have a place with power for the next shutoff.

“I think disabled people have done a lot of work around living inter-dependently and knowing how to build support networks so when there is an emergency, we switch into things we do every day and it benefits the community as a whole,” Milbern said. “Nobody else is going to save us, so we have to save ourselves.”

The sense of community and caring for one another will be necessary for the next shutoff – and the next disaster, Montano said. “It’s super important that people are checking in on their neighbors, especially neighbors that are elderly or may have a unique need or who may need help in a situation like this.”

Fortelka echoed that sentiment.

“This is a teachable moment for everyone to look out for your community and help your neighbors because PG&E doesn’t really care,” Fortelka said.