Power Outages and De-Energization Can Be Deadly to People with Disabilities

By Richard Skaff, Executive Director of Designing Accessible Communities

Innovative technology for electricity can mean the difference between life and death for people with disabilities. Ways to ensure more reliable sources of electricity, such as solar and battery backup, should be part of the dialogue at this week’s Wildfire Technology Innovation Summit in Sacramento.

The agenda is devoted to the use of high-tech measures, such as big data and artificial intelligence, to predict wildfires. These are exciting tools that could eventually reduce wildfires in California. But those tools only go so far to protect “us.” Nobody is discussing the immediate and dire challenge of supporting California’s vulnerable population of seniors and people with disabilities—many of whom may be hurt or worse when our electricity doesn’t work.

As California grapples with the devastation left by recent wildfires, de-energization has emerged as PG&E’s main solution to avoid their power lines sparking fires. This is a grave concern for the millions of Californians living with a disability, as well as the more than 8 million seniors in the state. For us, access to continuous and uninterrupted electricity is a matter of life and death.

At a community workshop in Santa Rosa, a PG&E representative warned that a public safety power shutoff could occur, at a minimum, once or twice a year within PG&E’s service area. Attendees were told that in most cases, PG&E expects to restore power within 24 hours, but outages could last two to five days. The outage may continue even longer in some cases because once the high wind/low humidity event has ended, PG&E staff must visually check every mile of de-energized power line before electrifying them to assure none are damaged. PG&E also says they will try to provide a 48-hour notice to area residents but may have to immediately de-energize in some situations.

Even 24 hours without electricity poses a great risk to people who rely on electrically operated life- saving medical equipment. This includes the thousands of Californians who rely on respiratory equipment and dialysis machines, or who need to refrigerate critical medicines like insulin. On a very hot or very cold day, the loss of air conditioning or heating (both systems that require electricity to operate) puts vulnerable seniors and people with disabilities at risk of death. Even simple actions, like opening a garage door, become an impossible task for many within this population during a wildfire, flood, or utility de-energization event, because they may not be able to manually open their garage door. That task may be the difference between life and death for someone with physical limitations.

When a person with a disability who uses a breathing machine or other electricity-dependent medical device doesn’t have access to power, they are put at risk. When PG&E determines an area it serves must be immediately de-energized but is unable to warn residents and visitors in the area, it could mean a life threatening situation for this vulnerable population.

We need innovative energy solutions in the home and at healthcare facilities that support people with disabilities and address these power issues.

One simple and effective innovation is already available: Home solar systems with individual backup batteries that can be connected to the grid. Solar and batteries are an immediate and important part of the solution to help provide continuous or backup power during planned or unplanned outages.

But existing programs and policies do not enable the immediate deployment of these options for California’s vulnerable population. Policymakers must recognize this deficiency and work with regulatory agencies, utility companies and other energy providers to encourage the installation of solar and energy storage for backup power.

We need resources dedicated to help this community that is the most vulnerable during a power outage. Here are a few steps that make a big impact:

  • Track, research, and analyze the impacts on vulnerable populations caused by man-made or natural disasters. For many of the state’s vulnerable population, utility de-energization is considered a man-made disaster!
  • Develop tools to reduce risks of power outages, such as solar and storage.
  • Prioritize the deployment of local clean energy resources among vulnerable populations in fire hazard zones, as well as in rural areas throughout the state.
  • Target solar and storage incentives to medical baseline customers, other customers with disabilities, and the frail elderly.
  • Significantly increase the medical baseline allowance to enable customers to cover the costs of tools for energy security, management and savings. The Solar Bill of Rights (Senate Bill 288), introduced this February, is an important step. It would protect the right of consumers to own solar systems and more importantly for seniors and people with disabilities, batteries that could store enough electricity to save lives during a power outage. Congress must pass this legislation. The technology industry, academic researchers, utilities, and government and consumers must look at ways to help this defenseless community. We must develop acceptable mitigation measures to protect the lives and health of seniors and people with disabilities. I’ve never felt more passionate about the importance of solar power as the right solution than after seeing my friends in the community suffer because of the lack of electricity. California must incorporate solar and storage to keep the power on for our state’s most vulnerable citizens.
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Attendant Care with Hannah Karpilow

Listen (29 min.)

We’ve all heard or said things like, “My attendant is part of my family,” or “I couldn’t get out of bed in the morning without an attendant – literally.”   For many people with disabilities, attendants are a crucial part of daily life

The Independent Living Movement fought for attendant wages so we weren’t entirely dependent on family members and friends.  Women of color, who provide most of the attendant care in California, were the force behind the permanent adoption of the California Domestic Workers Bill of Rights in 2016.

And, there’s some good news, as new state and federal programs are being proposed and developed to put more care into home care. Check out this plan for Universal Family Care and the massive detailed report of how to implement it on the state level. Hook up with the folks the California Collaborative for Long Term Services and Supports to make your voice more powerful.

Hannah Karpilow has spent years deep in the trenches of care giving for disabled people as well as providing support for other home care workers. 

Hannah’s List: How to find clients as a Home Care Worker

Call the Alameda County IHSS Registry worker information line at 510-577-5694.

More information about IHSS
Easy Does It Emergency Services maintains a list of available workers510-845-5513
Craigslist or help wanted health/ medical 
or place your own ad
or on your local nextdoor.com
Or make your own flyer or business card and post it at senior centers, libraries, etc. Meet with social workers at senior apartments and let them know you’re available. 

If you have any questions about the work in general, and want to talk to someone about it before you put yourself out there, feel free to contact me, Hannah Karpilow at homecarewiz@gmail.com

This program produced and hosted by Adrienne Lauby,

UPCOMING EVENTS

Access-Centered Movement®️ presents an
ACCESS-CENTERED DANCE PARTY BENEFIT FOR STACEY MILBERN
Saturday, July 6th, Noon – 4:00pm
Where: Oakland Sustaining Ourselves Locally, 1236 23rd Ave, Oakland
What: Dance classes, a raffle, food, and nonalcoholic drinks!
Wheelchair Accessible, Scent Free, ASL Interpretation, Non-Fluorescent Lighting, Low Stimulation Area, and No one turned away for lack of funds
This is a benefit for Stacey Milbern, beloved community member, Disability Justice co-founder, and activist.

P.G & E WILDFIRE SAFETY OPEN HOUSE– Activist Alert

People with Disabilities are attending to demand that P.G. & E start – Right Now, before the next wildfire – to address the impact of electrical power shutoffs on consumers, especially seniors and people with disabilities.
Monday, July 08, 2019, 6 – 8 p.m.
Oakland Marriott City Center, Junior Ballroom
1001 Broadway
Oakland, CAh

DISABLED AFRICAN MUSICIANS SUMMER BAY AREA FESTIVAL

Featuring Francine Atosha Mbusa and her band from the Congo

Francine Atosha Mbusa (center with guitar)

Sunday, July 7th, Eastside Arts (East Oakland) 2-5 pm
Tuesday, July 9th, Ed Roberts Campus (Berkeley) 7-9pm
Wed, July 10th, All Of Us Or None (Oakland) 7-9pm
Friday, July 12th Cafe Leila (Berkeley) 7-9:30pm

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Maytte Bustillos: Still Living with Brain Cancer

Friday, June 21 2:30-3 pm PST on KPFA radio

Maytte Bustillos

It’s ten years since her brain cancer diagnosis, a time when doctors gave her two years to live. Now, it’s three days before her fourth brain surgery and Maytte Bustillos is not thinking too much about all these numbers. She speaks with us about finding joy amidst the challenges of living with a chronic and terminal illness.

Since we last talked with her, Maytte Bustilos has been raising her daughter, teaching school and dealing with the end of her marriage.  She speaks openly of the challenges and delights of a life of health routines, family ties and spiritual strength.

Produced and hosted by Shelley Berman.

Heading Home
Day after surgery
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Transportation Justice

Friday, June 7, 2:30-3 pm PDT on KPFA

Are you free to move about the Bay Area? Reliably? Conveniently? Accessibly? Affordably?

Does it bother you that people with cars can go anywhere they wish at any time, while you cannot? Are you forced to ride for several hours in a paratransit vehicle only to arrive at your destination too late for your appointment, or halfway through the concert?

The Transportation Justice Project wants to help. See their vision statement here.

The East Bay Center for the Blind (EBCB), an organization with deep roots in the disability community, is setting a table where users of the system can provide solutions.

Learn what they are doing and how your voice can be heard from our guests, Daveed Mandel and Jenna Rubin.  The EBCB Transportation Justice Project is sponsored by a grant from the San Francisco Foundation

Produced and co-hosted by Eddie Ytuarte.
Co-host: Sheela Gunn-Cushman.

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Transportation Justice Project – Vision Statement

Are you free to move about the Bay Area? Reliably? Conveniently? Accessibly? Affordably?

Does it bother you that people with cars can go anywhere they wish at any time, while you cannot? Do you have to walk a long way and wait a long time in inclement weather for the bus or train? Are you forced to ride for several hours in a Paratransit vehicle only to arrive at your destination too late for your appointment, or halfway through the concert?

Freedom of movement is a fundamental right guaranteed under the United Nations Universal Declaration of Human Rights, yet seniors, people with disabilities, and all other non-drivers are denied it.

We deserve far better!

The transportation justice movement is gaining momentum here and abroad. The East Bay Center for the Blind recently launched Transportation Justice Project, funded by a grant from the San Francisco Foundation, putting the focus on the needs of local seniors and people with disabilities.

We seek to close the gap between drivers and non-drivers by no less than a complete overhaul and integration of all modes of public transportation. We now have allies in the cause, including Urban Habitat, Transform, Seamless Bay Area, and LIFE ElderCare.

Let’s build a coalition! Join the transportation revolution now!

For more information contact:
Jenna Rubin
Outreach Coordinator
707-672-2408
jennacrubin@gmail.com

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Mental Disability Overview

Today we talk about Mental Disability through many points of view.  We hear a poem about gentrification from an artist living with anxiety, stage two bipolar disorder, and depression.  A psychiatric nurse describes her recovery from severe schizophrenia… and more.

Through the consumer and client empowerment movement, people are on the move.

Hear their stories as well as an analysis of the political and social landscape they navigate every day.

Schizophrenia, obsessive compulsive disorder, depression, and eating addictions. We play excerpts of interviews with consumer advocate Sally Zinman, Catherine Penny and Fable the Poet.

This is a fund drive program and we are asking you to support KPFA, the station that supports our work and the work of so many people with mental disabilities working for their own recovery and the recovery of our culture.

Produced by Adrienne Lauby.  Hosts: Shelley Berman, Adrienne Lauby & Josh Elwood.

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CalABLE Savings Accounts

The disability community can thank people with Developmental and Intellectual Disabilities (and their allies) for an incredibly useful new tool.  ABLE accounts have come to California.  For the first time, many of us can now amass substantial savings without being penalized with dollars deducted from our Social Security or loss of Medi-Cal benefits!

Supplemental Security Income (SSI) benefits limit savings to $2,000. — a very shaky safety net indeed. But the federal and state ABLE programs offer a work-around.

Dante Allen, Executive Director of the CalABLE board.

As usual, there’s twists and turns.  Find out more as we talk with Dante Q. Allen, Executive Director of the CalABLE Board.

Sheela Gunn-Cushman and Adrienne Lauby host.

There is a move to expand these accounts to more people.  To find out more, visit the Pushing Limits website. 

Tell your Congressional representatives to sign on as a co-sponsor.  There are talking points and other support at the link above.

Other contacts for the CalABLE program:
Phone: 833-Cal-ABLE (833-225-2253) between 9am and 5pm PT
Email: CalABLESupport@CalABLE.ca.gov
CalABLE@treasurer.ca.gov

Pushing Limits has been selected as one of the Ten Top Audio Podcasts & Radio You Must Subscribe and Listen to in 2019 by Feedspot.com.   It’s a great list of podcasts and we’re honored to be among them.

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Tell Congress to Support the ABLE Age Adjustment Act!

To find your Senators go here: https://www.senate.gov/general/contact_information/senators_cfm.cfm

Please contact your congressional representatives and ask them to cosponsor the ABLE Age Adjustment Act (S.651) today!

To find your House of Representatives members go here: https://www.house.gov/representatives/find-your-representative

TALKING POINTS

--I am your constituent from [name of city and state].

--I am calling to ask Senator/Representative [NAME] to cosponsor the ABLE Age Adjustment Act (S. 817/ HR 1874).
ABLE accounts are important to people with disabilities because they allow them the opportunity to save more than $2000 in assets -to be spent on disability related expenses - without jeopardizing their much-needed public benefits like Supplemental Security Income (SSI) and Medicaid.

--Unfortunately, only people whose disabilities occurred prior to age 26 are currently eligible for ABLE accounts.

--By increasing age of onset from before age 26 to before age 46, this bill will enable at least 6 million more people with disabilities to open an ABLE account and enhance their financial independence and quality of life.

--It will also increase the likelihood that ABLE programs across the country will be sustainable and costs will be kept low.

--I hope we can count on Senator/Representative [NAME] to support the disability community and cosponsor the ABLE Age Adjustment Act!

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Susan da Silva

Friday, March 29, 2:30 pm PST on KPFA

The State of Our Bodies (& Minds)
The State of the World
The State of the Pacifica Network

We’re very proud to bring you a discussion with Susan da Silva, one of the newly elected listener representatives to KPFA’s local station board.

Get behind the headlines on far-right President Bolsonaro’s effect on Brazil. Learn about a big financial challenge for the Pacifica network. All that, and
more.

Shelley Berman & Adrienne Lauby host.

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A Canary Dies – Maria’s Obituary

Maria (Sargent) August Ani Thupten Tsondru
August 3, 1970 – March 12, 2019
Trigger Warning: the following has been written by Maria and subsequently posted by Sarah, Maria’s friend. It contains discussion of self-inflicted euthanasia. If this topic is particularly sensitive for you, please be forewarned. 

On March 12th, I chose to end my Earth Walk and reunite with the Mother of All Things. I wanted to free myself from the straightjacket of electrifying pain and neurological debilitation of Electro-Hypersensitivity (EHS) and Epstein-Barr Virus (EBV). These hidden modern-day epidemics humbled me and connected me to the great suffering of others. Yet, they also shattered and dehumanized me. The constant tension of strange symptoms and crushing pain left me cut off from a life of embodied prayer and active altruism; I felt alienated from my true nature and impotent to be of service. I decided the greater good was to give my life with the aspiration to raise awareness and help others. As Thomas Merton said, “Man has no greater love than that he lay down his life for his friend.”

If anyone asks, you can say I ended my own life. But it would be more accurate to say I died from Electromagnetic Field (EMF) poisoning. I am not ashamed of my actions. They were based on compassion for my own suffering and the desire to prevent more people from becoming sick.

 
I’m not the first person with Electro-Hypersensitivity (EHS) to die by their own hand, but perhaps I’m the first to publicize it. And that’s my whole intention. Let me be the poster child for this 21st century plague. Let me be the impetus for positive change. What sends a stronger message than death? The message is: seek the truth and learn how to protect yourselves. The message is: create housing opportunities for people with EHS.


Man-made Electromagnetic Fields (EMFs) at current astronomical levels are unprecedented in human history. And they are not safe. Human cells cannot function properly under this 24/7 radiation shower. That is why people are getting sick. I chose to die so you would know how important it is to reduce your exposure to this invisible toxin. I chose to die so the world would see that safe camps for EMF refugees are desperately needed.


EHS has all the ingredients of torture: cause someone intolerable pain, separate them from the community, and prevent them from sleeping. Is that a risk you are willing to take? Is that a life you want for your children? It’s much, much easier to prevent than to cure. And those, like me, who get a severe case, find there is nowhere to live, detox, and recover. Let us care for this growing population of our society. Now is the time to start developing wilderness Safe Havens. Every person deserves a safe place to call home.    


I do not want a funeral, memorial service, or life celebration. Instead, please help the living by honoring my three final wishes. Thank you and may you be well.

  1. Take simple steps to lower your EMF exposure and stay healthy. Organize housing for people sick with EHS. Resources for this are: the fantastic book The Non-Tinfoil Guide to EMFs and the Safe Haven tab at www.HeartMind.info.  
  2. Cleanse your body of radiation, viruses, heavy metals, and pesticides, which cause EHS and other chronic illnesses, including lupus, Lyme, MS, RA, and cancer. It’s fun and yummy!  Read the beautiful book Life Changing Foods by Anthony William.
  3. Take extra good care of each other. Spend time each week in loving service to a sick, injured, or housebound person. Let them know they are not forgotten. This is the true purpose of being human. Resources for this are: the books Everybody Always by Goff, Peace Pilgrim, and the TLC Book tab at www.HeartMind.info.  

May my death usher in a new era, an era in which EHS and EBV are taken seriously, diagnosed correctly, treated immediately, and prevented widely. May this be an era of permaculture eco-villages, bountiful food forests, abundant altruism and safe technologies. I gladly sacrifice my life for that purpose. May it be so!


Visit my blog, www.HeartMind.info, for more information and continued updates from friends.  Look for me in the sun, the moon, and the stars. Pray that I’ve melted into Mother Luminosity and am helping all beings, in all worlds, in all ways. May the bodhichitta flourish! 

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