Berkeley residents with disabilities say their needs ‘not built into’ PG&E shutoff policy

Power lines with sunset in the background
PG&E’s planned power outages throughout October affected some residents more than others. Photo: Chris Polydoroff

At first, Alex Ghenis couldn’t tell whether or not he’d lose power in PG&E’s late-October shutoff.

On the utility’s online map, it looked like Ghenis’ place was smack inside one of those colored blobs delineating outage zones. But his address, which is near Alta Bates hospital, didn’t turn up in PG&E’s location finder for affected residences.

Many people in Berkeley encountered that confusing contradiction, and many, like Ghenis, decided to just risk it instead of evacuating or fully preparing for several days without power.

So Ghenis was relieved when, come Saturday, Oct. 26, his lights stayed on.


“I was really grateful for that, but just those couple hours of making that decision were pretty stressful,” said Ghenis, 31, a policy and research specialist at the World Institute on Disability.

For him, the stakes were higher than losing some frozen pizzas or overstaying his welcome at a friend’s apartment in the flats. Ghenis has been a quadriplegic for 15 years, so he uses a wheelchair and has personal attendants assisting him with daily tasks.

Many people in the disability community have criticized PG&E and local and state governments for failing to adequately address accessibility needs in the longterm lead-up to the shutoffs that blanketed Northern California throughout October.

In Berkeley, city staff hit the pavement during the shutoffs, working hard to identify and make house calls to the residents with disabilities and medical needs who rely heavily on power. PG&E itself has a program funding backup chargers and hotel vouchers.

But vulnerable residents say electricity is their lifeline and, despite these efforts, systems are still not set up to take care of them when their power’s cut.

“The extent of need was not considered, not built into this policy,” Ghenis said.

Berkeley is the birthplace of the Independent Living Movement, but residents say they still don’t have the resources they need to respond to emergencies. Photo credit: Fran Osborne

The gaps were obvious to him when he started considering an evacuation plan.

“I can’t think of any friends’ homes I could necessarily go to — pretty much everyone has a stair or two,” Ghenis said in a phone interview. “And I can’t crash on couches. I’m pretty tall, so they’re low compared to my wheelchair.” If he lost power, he wouldn’t be able to easily recharge that wheelchair, a process that can take 12 hours if the battery is totally drained.

“Coordinating with personal attendants is huge,” he added. “We really try to stay in touch and recognize that cellphones are the way that happens. If someone’s cellphone battery runs out and we can’t get in touch…combine that with the danger of, be it a fire or even an earthquake hitting, and that’s something I’m really worried about.” (Thousands in California also reportedly lost cell service during the outages, which cut them off from emergency alert systems.)

Ghenis knows he could afford a couple nights at a hotel if it came to that, and if he could find one that was accessible. He’s employed and is budget-conscious. But he knows many other people who rely on electricity are surviving on nominal disability or social security checks and could face even scarier impacts in another longterm blackout.

In Berkeley, where around 7,000 customers lost power on Oct. 26, there are approximately 100 residents who are part of PG&E’s Medical Baseline program, according to the city, and a large disability community beyond that.

City staffers said they made an intensive effort to reach vulnerable people during the two shutoffs, which were prompted by high fire risk.

“You had a situation where you had wildfire danger, and you had people who might have trouble leaving in a disaster,” Chakko said.

In response, Berkeley activated BEACON, its network of local organizations and individuals that provide services to people who have what the state and federal governments call “access and functional needs.” City staff also created an internal task force and plan to reach the 65 individuals PG&E said it couldn’t contact in Berkeley.

“Over the course of Saturday and Sunday we started calling every single one,” Chakko said. “For those we couldn’t reach, we sent teams of staff out. We reached every single one.”

The city also put out frequent updates on the outages online, and posted fliers in community centers directing people with access needs to call 311, Chakko said. The city website promoted locations where people who use medical equipment could go charge those devices, such as the library, the Berkeley Free Clinic and PG&E’s resource center.   

“As a result of our in-person outreach, we reached families that didn’t know the extent of our resources and families who were very grateful,” Chakko said. “It was left up to cities and counties and others to respond. That’s incredibly frustrating, but at same time we can’t stop at frustration.”

“Our power is out now in the Berkeley hills. Here’s a view of our dark neighborhood, with city lights below illuminating the smoke drifting in from the Kincade fire.” Oct. 26, 2019. Photo: Sharon Gamson Danks

However, the city did get into some trouble during the first shutoff, when disability advocates and Twitter users criticized official messages repeatedly telling residents with disabilities to “use their own resources to get out,” or call 911 if they couldn’t. Hundreds of people blasted the city for seemingly leaving vulnerable people to fend for themselves.

During the second outage, the city changed the language it used in those messages, and publicized more available resources. But some people in the disability community didn’t wait around for the government to provide assistance, instead taking on the task themselves.

Local people with disabilities take care of each other, themselves

“There’s already an existing informal network of disabled activists who help each other out,” said Claire Light.

Light is part of a “mutual aid” effort by Oakland-based Disability Justice Culture Club and sponsor Power to Live to connect people who need help during the shutoffs with people who have something to offer them.

Light spoke with Berkeleyside last week, while juggling calls to the people who’d asked for services.

“We have volunteers on phones doing two things,” she said. “All the people on triage are disabled and directly speaking to disabled people who requested assistance. They know they’re talking to someone who can empathize with their situation. Then there’s the resource team. Many of them are able-bodied. We relay the requests to them as they come in, and they do research if necessary or find resources if necessary.” There is a related effort to raise funds for those resources online.

The Oakland-based group is looking to expand its work as widely as it can, but as of last week had only received two requests from Berkeley.

Meanwhile another advocate was keeping busy in the city throughout the shutoffs.

For years, John Benson ran Berkeley nonprofit Easy Does It’s wheelchair repair service, handing out fresh tires and responding to emergency calls throughout the city. He no longer works there, but his old clients still have him on speed-dial.

“I’ve been carrying around a battery pack with an inverter to open up electric doors,” Benson told Berkeleyside last week. He also got requests during the latest outage from people who needed their wheelchairs charged or air mattresses hooked up to inverters.

Ghenis said those supplies can be life-saving but hard to come by.

“The size and cost of a backup battery to support someone who’s medically dependent on oxygen — that’s a couple thousand dollars,” he said. “It’s well beyond what most people on a fixed income can afford. There’s only so many that are around or being distributed.”

People stand around large tent. Two have bright yellow vests on.
During the shutoffs, PG&E opened resource centers where residents could come charge devices. The Berkeley center was only open for the late-October outage. Photo: Natalie Orenstein

Many of Benson’s former clients also depend on electricity to refrigerate expensive medication or use ramps and small elevators in their homes.

“Many quadriplegics have air mattresses where certain parts inflate and deflate,” Benson said. “That’s very common in the disability world, and when power goes out, they deflate and they’re laying on a metal frame. There are a lot of things you don’t even think about” if you’re able-bodied.

Because people with disabilities have such a wide range of specific needs, creating a flexible volunteer corps like Light’s might be the most effective way to prepare, Benson said. Several years ago, Easy Does It worked with the city of Berkeley to formulate a disaster preparedness plan, he said. That entailed maintaining a list of residents who wanted to get “buddy calls” in an emergency, and training volunteers who be ready to make them, he said.

“If the power was out for a few hours, we would actually go to their house with backup supplies,” Benson said.

At UC Berkeley, which lost power in both outages, Karen Nakamura facilitated the creation of information sheets designed to help residents with disabilities prepare themselves for a range of disasters and emergencies. Nakamura, an anthropology professor, runs the Berkeley Disability Lab, which so far has created info sheets on such topics as charging a wheelchair off a car and choosing which air filters to buy.

During the shutoff in early October, Nakamura told KQED that the disability community has been ringing the alarm around emergency preparedness for years. The response to the shutoff by PG&E and local cities was nevertheless “a mess,” she said.

For many Berkeley residents, both disabled and not, the shutoff was the final push needed to get that “go bag” together or stock up on flashlights.

“I did take the time and effort to pretty much pack up a whole duffle bag with some of my medical supplies, a couple days’ worth of clothes, and an extra wheelchair charger,” Ghenis said.

As a researcher who studies climate resilience, Ghenis said he actually doesn’t fault PG&E for powering down, despite the blame coming from everyone from the governor down to legions of social media users. He sees the shutoffs as a response to a massive problem that is only partially of PG&E’s making.

“Forest fires are a combination of poor forest management, not enough upkeep of electrical infrastructure, and then climate change — deeper drought, hotter heat waves, and stronger, drier Santa Ana winds,” he said. “We’re going to have to do some of this (shutoffs) as disaster mitigation. But we need the utilities and cities and everyone else needs to make it inclusive, and figure out what people with disabilities really need.”

PG&E does have a pilot program funding local Independent Living Centers, so they can distribute hotel vouchers and charging equipment. In Alameda County, Hayward’s Community Resources for Independent Living (CRIL) is participating. A PG&E spokeswoman declined to release the amount of funding provided so far because the utility is still working out the final contracts. Ron Halog, CRIL’s executive director, said his organization has received 10 battery units with solar panels so far — 10 others destined for CRIL were redirected to the Kincade Fire area — and is working with the county to distribute them.

Ghenis said it’s a good program that hasn’t gone far enough yet.

“The framework is there,” but the money isn’t, he said. But he’s hopeful that awareness is growing.

“I think with the level and widespread nature of the shutoff, people are getting that this is a big issue,” he said. “In the next year there’s got to be a huge effort for distributing batteries and chargers, for training people, for getting outreach systems in line.”