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What We Mean by CARE in a Year of Cascading Crises: Part 2

Thursday, January 28, 2021

Living with Disasters and Disabilities

 

by Shefali Juneja Lakhina, Co-Founder of Wonder Labs,  Alan Kwok, Director of Disaster Resilience at Northern California Grantmakers, and Carl Sigmond, Disability Community Advocate at FREED

Two years ago, communities across northern California experienced their first major rolling blackouts in nearly 20 years due to a Public Safety Power Shutoff (PSPS) event, a preemptive action by utility companies in California to prevent the ignition of wildfires. Then, in 2019, we heard from a disability funder during a briefing on the Kincade Fire (in the North Bay) about the challenges facing those with disabilities as a result of the PSPS event. Last year, with widespread wildfires affecting communities throughout northern California, we heard hearing about the impacts of PSPS events on Californians with disabilities. We know that in every major disaster from hurricanes to wildfires, people with disabilities are disproportionately impacted.

We invite you to read about the experience of Carl Sigmond, a disability community advocate with the FREED Center for Independent Living. Below, Carl shares his story about living with wildfires and disabilities during a pandemic. This is a story about personal and systemic barriers to his preparedness that can prevent individuals like him from coping with wildfire impacts. As someone who is employed, is well-networked, and has financial resources, Carl’s experience shows why personal preparedness isn’t always straightforward. Like other communities, the disability community is not homogenous, with each member having unique lived experiences, needs, and capacities. We want to highlight the crucial support that frontline organizations are providing, while identifying areas for future work.

“I moved from the Sierra Friends Center in Nevada City to a downtown apartment in Grass Valley just six weeks before the Jones Fire started on August 17. I was working from home that Monday while closely monitoring updates through the day. As the fire started to advance, I felt increasingly unsafe. I live with a speech disability and use a wheelchair for mobility. My apartment was not in an evacuation order or warning zone, but I decided to leave. I don't drive, I didn't have a plan in place, and I felt vulnerable. 

I called my friends for help. They had already evacuated earlier in the day. They decided to turn back and pick me up. With me in the picture and their two cats in the car, we decided that it would be simplest to get an Airbnb in Sacramento.

I did not consider accessing an evacuation shelter because I have a good network of friends across the Bay Area and prefer to rely on them. I consider going to a shelter a last resort. I can't imagine myself going to a shelter. Communication would be a big challenge. Activities of daily living (ADLs) would be a challenge. My friends know me and my needs, and I know (some) of their houses and know that they meet my access needs, or if they don't, that I can ask for the help I need.

After we stayed the night in Sacramento, I decided to relocate to a friend’s house in Oakland. Although the evacuation orders had been lifted and Nevada County had been repopulated by the end of that week, I did not want to return home. I didn't want to return to Grass Valley only to feel vulnerable again. I was worried, what if a fire started again and I still didn’t have a plan in place?

While I was in the Bay Area, I started developing an emergency evacuation plan. I also connected a team of people in the Bay Area on Slack. I am now in the process of connecting my Grass Valley evacuation team on Slack to assist with communication. In those weeks I took refuge in the Bay Area, I also spent a lot of time arranging for friends and friends of friends to go shopping for me and prepare food I could eat on my own. This time and effort took me away from my work. The pandemic made the situation more challenging. Due to health and safety precautions, I didn't want anyone in the Bay Area to physically help me eat. When I eat on my own, I can only physically eat certain foods, and they have to be prepared in a certain way. It was getting tiring. I returned home, three weeks after the Jones Fire had been contained.

On my return to Grass Valley, I have been dealing with the Public Safety Power Shutoffs (PSPSs). Some nights, I have felt completely helpless. I'm still working on my disaster preparedness plan. I’m networking in my immediate neighborhood as much as possible, but I don't know too many people right in this area. Soon after I got back to Grass Valley, I texted my upstairs neighbor and emailed an acquaintance around the corner. I never heard back. I will be following up with both.

At FREED, we have our hands full as far as emergency preparedness. We help consumers with personal planning, we provide backup batteries and hotel stays during PSPSs for people who use life-sustaining medical devices, and we work with the County and State Offices of Emergency Services to advocate for and coordinate the needs of people with disabilities during disaster planning, response and recovery. But there's only so much we can do. One of the things that we do to help people personally prepare for a disaster is to support people in identifying five people that can support them during a disaster. Something I hear a lot from our service staff is that a lot of people just don't have five people in their lives. If I am having trouble assembling an emergency team, I can only imagine what other people are going through.

Planning ahead, I'm identifying other friends' houses to be potential evacuation sites. In non-Covid-19 times, I travel frequently without my attendant, relying on the friends I visit to help me with the ADLs I do need help with. Currently, I only have one attendant (which itself is problematic and is something I'm working to change), and she has a family and multiple pets. So, evacuating with her is not really an option. Even if I did, there would be a funding issue, as I am not allotted 24-hour care.”

A recent survey by the California Foundation for Independent Living Centers (CFILC) of people with disabilities found that of a total of 445 respondents, only 1 in 4 have a disaster preparedness plan. Disaster preparedness is important because people with disabilities are two to four times more likely to be injured or die in a disaster. People with disabilities are also more likely to encounter barriers to accessing emergency services, including emergency notification, evacuation, sheltering, long-term recovery and have increased risk of institutionalization during and after disasters. 

Philanthropy’s role in supporting the disability community for disaster resilience

Over the past year, CFILC’s Disability Disaster Access and Resources program and FREED’s partnership with the Listos Campaign, among others, have provided much-needed peer entry points to engage people with disabilities in emergency preparedness.

Using the framework of CARE (Collaboration, Accountability, Responsiveness and Empowerment), we can build on on-going efforts to sustain multi-year funding for community outreach and capacity building for frontline organizations serving vulnerable populations, and advocate for inclusive community infrastructure – utilities, roads, shelters – and policies for public safety and well-being. Decades of experience shows that if we put the needs of vulnerability-bearers first, we can plan with and for all-of-community.

Unfortunately, disability experiences are largely missing from current discussions around climate solutions. We have a real opportunity to include disability perspectives and experiences in ongoing discussions around emergency and climate resilience. People with disabilities can contribute to ongoing discussions that advance disaster resilience, including housing and economic justice, public health and disaster planning.

If we are going to make positive and transformational change with our partners in the disability community, we must address disability inclusion across our work. The National Network of Consultants to Grantmakers recently published a working paper, “Disability Inclusion in Philanthropy,” which outlines three areas of engagement for funders:

  • Examining and changing internal policies and practices
  • Conducting disability-inclusive grantmaking
  • Supporting grantee partners’ disability inclusion efforts

If each of us engages with our work through an equity and disability-inclusive lens, there is no doubt we can achieve more caring and just pathways for all members of communities, regardless of ability, to coexist with wildfires and compounding hazards.


 

This blog draws on initial findings from NSF-funded research on Wildfire preparedness and evacuation planning in a pandemic’ (NSF Award #1841338). Any opinions, findings, and conclusions or recommendations expressed in this material are those of the authors and do not necessarily reflect the views of the NSF, SSEER, or CONVERGE.