Disability and Climate Change

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CARLY PACHECO, HOST: From KVMR and in partnership with FREED, this is Disability Rap.

CATHLEEN PARSONS: The storm came really quick for me up off of Green Horn. It came so quickly that I couldn't get out of my long driveway.

PACHECO: Today, a look at the winter storm that hit Nevada County on December 26 and the intersection of disability and climate change.

ALEX GHENIS: Having conversations with well-intentioned environmental advocates about what they're forgetting when it comes to disability inclusion, in any of their efforts.

PARSONS: I really think that we need to start with knowing who our neighbors are. And we can't wait for help, and we need to have a plan in place. And what does that look like, not just for yourself?

PACHECO: That’s all coming up right here on Disability Rap. Stay tuned!

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CARL SIGMOND, HOST: Welcome to Disability Rap. I’m Carl Sigmond with Carly Pacheco.

On today’s show, we focus on the intersection of disability and climate change and the disproportional impacts extreme weather can have on people with disabilities and older adults. We’ll start local here in Nevada County and then zoom out for a broader perspective and context.

PACHECO: On December 26, Nevada County was hit with a massive snowstorm, the likes of which we have not seen in recent memory. The snow caused down trees and widespread power outages that affected over two-thirds of the county - over 60,000 households. While some power was restored within a matter of days, other residents went one and two weeks without power.

SIGMOND: As we have discussed on this show before, Nevada County, for better or worse, has gotten used to Public Safety Power Shutoff, or PSPS, events, when our power utility, PG&E, shuts off service to reduce the risk of wildfire. Usually, these events last between two and four days, not two weeks as was the case with this snowstorm.

PACHECO: People with disabilities and those who use life-sustaining medical devices were significantly impacted by this storm, and that's where we're going to start today. We’re joined by a FREED consumer, Cathleen Parsons, and we're also joined by Alex Ghenis, the founder of Accessible Climate Strategies. Alex is a climate resilience and disability rights researcher and advocate, dedicated to safeguarding the well-being of people with disabilities in a changing world.

SIGMOND: We welcome you both to Disability Rap. Cathleen, I want to begin with you. Can you briefly describe your disability or health condition and how it impacts your daily life?

PARSONS: I was in an accident in 1997, and I’ve had eight back surgeries. And I have a lot of metal in my back and other various parts of my body that I’ve had operations on. And recently, I’ve had two eye surgeries.

PACHECO: Can I ask what your story was during the storm? What happened during the storm and what were the challenges that you faced?

PARSONS: The storm came really quick for me up off of Green Horn. And there's two roads to get out. But it came so quickly that I couldn't get out of my long driveway, and I had to abandon my car, leave it, and have my daughter hike in to be able to get my stuff to be able to get into her car about a mile down the road. And then I got out. It just happened so quick and the snow was so heavy. You can be as ready as you want [in] your car [but] it's a matter of getting in and getting out. And there was just no access getting out of the long driveway that I live in.

SIGMOND: And then what happened? Was your house without power? Where did you go?

PARSONS: I had no power actually the day before the storm because the rain was so bad. And I knew that we were going to get snow. And I lost electricity actually the day before the big storm, and I just thought it would be for a few days. That's what I packed for. So, I wasn't really ready for long term.

SIGMOND: And how long were you without power?

PARSONS: A total of 19 days. I did get power back on, but then it was not safe to come up to my house because there were so many trees down. And I didn't have access to get into the last - probably - mile and a half of the stretch to my house.

SIGMOND: So where were you for those 19 days?

PARSONS: FREED was a great lifeline and helped me tremendously, helping me get a hotel to have a safe and secure place in Roseville, and also to get me transportation back from Roseville to Grass Valley to get my car that was buried for two weeks. And I got that towed to Nevada City. And also gift cards for food and essentials every day. It was an absolute gift from FREED through the PG&E program that they have to help people in disasters.

SIGMOND: And I will just add that we are able to do that through our partnership with California Foundation for Independent Living Centers and PG&E. Cathleen, what was it like to be evacuated for that long?

PARSONS: Very stressful, because I had to find out how to get to and from doctor's appointments through the Medi-Cal program that gives you 200 miles round-trip for medical appointments. But so many things were closed down and I was in Roseville. And I just had to think outside the box and just give up whatever I was going to do as far as appointments. But the Medi-Cal program does not pick you up or drop you off unless you are actually at your house address, which I found out.

PACHECO: Well, there is a significant gap identified in this event, Cathleen, because that was not knowledge that I had. But is certainly something that we as the disability community can advocate for moving forward: that when people are evacuated, they still need access to their medical care. My goodness.

PARSONS: Well, I was thinking of people that were having dialysis. I would sit in the lobby to try and help people navigate different services while I was there, because there were so many people that were like: What about this? What about my doctors? And I’m like: Okay, let's collectively - you know - try and find out answers by calling the transportation department. We were all on speakerphone and we all tried to connect with... trying to get services, and it was not available.

PACHECO: Oh, yikes! And Cathleen, I know you talked about having a plan, having your car packed. You knew that there was a storm coming. So you were doing your best to personally prepare for this. What advice do you have for people with disabilities after surviving this ordeal? What might you do differently in planning for future disasters, or what advice do you have for others when they're trying to plan for disasters?

PARSONS: Well, I have to say: You have to over prepare. Don't think it's going to be a few days. Don't assume anything. Have all your medications in place. Have a medication list with you in case you need to get refills or you can't get them. Your pharmacy. Everything that you need. If you have a service animal, have everything as far as their shots, proof that they're service animals. There was many people in the hotels that didn't have that, that had service animals, or they had - you know - disability - you know - different things that they needed. And they just were too stressed about what was happening to really navigate to get what they needed.

And I have started years ago with nextdoor.com on Bennett Hill. And in order to do a neighborhood, you have to get 40 people to sign up. Well, that's how you get to know your neighbors. That's how you get to know people. That's how you start to connect. And I think of it as a team captain for every block. Each person has to have two people to check on. People go around; see who needs what. You've got to think outside the box, and you can't think of just yourself. You've got to think of other people, as well, because we all need to get back to the basics of knowing our neighbors.

SIGMOND: I’m so glad you brought this up, because one thing we tell our consumers here at FREED, whether it is preparing for PSPSs, wildfires, or this snowstorm, is: Don’t wait for authorities to come get you. You need to build your own resiliency team.

And that is where I want to bring Alex in here. Alex, welcome back to Disability Rap. I know this is what you spend a lot of your days on, thinking about these issues, thinking about how they impact our community, and thinking about the future as we expect more and more of these events. So, can you begin by talking about the importance of community resiliency? And then we’ll go from there.

GHENIS: With climate change, we are - especially here in California - looking at a combination of more extreme weather events, and that includes wildfires, for a number of reasons. It also includes larger swings in the way that we get precipitation. So, the storm that you experience this year was based on what we call an atmospheric river event, and those are getting fewer and farther between, but then also stronger.

A lot of the disability community might know the difference between the medical model of disability which says able-bodiedness is normal and the disability is broken, like an aberration from that. Versus the social model of disability which says: actually, the things that disable me are the lack of services, lack of physical infrastructure, ramps, personal care attendant services, translations. And some of the things that fit into what is creating the social disability in the face of disasters [are] things like: Number one, where we have decided to build towns, a lot of the times not knowing what was coming down the pike at us. And I think that some of your consumers and people in higher wildfire zones are starting to experience that.

And that combined with other social models of disability - of not having appropriate power service, not having good evacuations, not having the ability, as the other guest said, to go any reasonable distance and still get medical services. These are all built into either a broken system or a system that wasn't properly anticipating what we have in the future.

We as advocates... I know certainly your team at FREED is pushing for social and institutional change to fix those problems. The reality is that, certainly in the meantime, a little bit of the preparedness falls on our shoulders. It shouldn't be that way. The system should be better, but this is the reality of the moment. And as we are fixing the system, we need to build our own better systems, and a lot of that is community. I was so excited to hear about these community resiliency groups and networks that are forming on social media. And simply going out and meeting your neighbors, and saying: who's going to check on the next door - the actual next door, not the website - and who's going to bring what supplies? Who has the barbecue, right? This falls on our shoulders. I wish it wasn't that way, but at least for the time being, our own safety and survival... We can contribute to making that better situation a reality.

PACHECO: Thanks so much, Alex, for those thoughts. And I wonder, as you do state wide work and you're looking at this from the 20,000 foot level, what are some of the most promising practices or best practices that you've seen local communities adopt to make sure that folks with disabilities, older adults, people with access and functional needs, are incorporated in planning and response and have the most resiliency possible during these disasters?

GHENIS: Well, just to speak to a couple of them. There's been a lot of involvement by the independent living centers to reach out to the community to help individuals prepare. Social media... It's fantastic to see that happening on the grassroots level. The Public Safety Power Shutoff program was another one of these climate dilemmas, where people get stuck between a rock and a hard place. A lot of the disability community is legitimately more at danger of getting injured or even losing their lives in wildfire. And one of the ways to reduce wildfire risk is to cut off power that so many people with disabilities need for their plug-in medical equipment: a ventilator, a refrigerator, to keep medications cool. The list goes on of things that people need power for.

So, the distribution of emergency backup battery systems, which I know that FREED and other independent living centers have a growing cache of large-scale backup batteries that can be used by individuals. Evacuation plans: I think that there's more engagement with the disability community - having seen how there have been tragedies and some people left behind - with reaching out to and being more involved in discussions with disaster managers.

From an even higher level, [something] I think that's difficult for a lot of people to digest is: there's a growing movement to try to build housing and where people live in more climate safe areas. And then we also know that new housing construction is more accessible than old housing construction. So there are folks that are taking a step back and saying: We need to build a more climate resilient world here in California and really beyond. And there are other people with disabilities involved in trying to make sure that that new built world is as accessible as possible.

And climate change touches everything, right? Transportation is related to climate change. Where you build housing is related to climate change. How we, here in California, manage our water resources is relevant to climate change. And shoot, if you don't have clean water or as clean a water as possible, that could affect somebody's chronic health condition. That could create chronic health conditions. That could make it so that hospitals don't have clean, potable water or somebody with a wound that they're taking care of at home can't get good, clean water and the rest of it to help sanitize their hands, wash their hands, whatever it might be. So, everything is connected. I think that a lot of the climate work that's being done outside of the disability community benefits the disability community, but there needs to be more involvement in making sure that happens and goes beyond what's already there.

SIGMOND: I really appreciate all that you brought up, Alex, and as we begin to wrap up, I’m wondering what message you have for the disability advocacy community, for the environmental movement, and for the intersection of those movements.

GHENIS: I think, reach out. Expand your horizons in terms of what climate change means, beyond snowstorms, power outages, and fires, which are a lot of the things that we're seeing here in California. Surely, extreme heat events are another big concern. My parents - well, my mom and my stepdad - they're up in Portland, and there was an extreme heat event that killed hundreds of people in the northwest. And a disproportionate number of those were people with disabilities [and] older folks, and there are intersections between age and disability. And then also homeless people that didn't have easy access to cooling shelters. And there's an intersection between homelessness and disability.

So, for each of these things that happen, if you can't get involved in one specific thing, there are other opportunities. There are opportunities that are related to climate change that you can help out with. And tell yourself: If I'm involved in financial literacy and empowerment, then I'm helping people maybe get a little bit more savings, get some job skills so that, goodness gracious, [if] their home burns down and they have to move to a new area, they have enough money to stay in a hotel instead of a shelter, and they have the job skills to be able to land a job somewhere else, maybe in a more climate safe area. So, there's that.

Also having conversations with a lot of who I have found to be really well intentioned environmental advocates about what they're forgetting when it comes to disability inclusion in any of their efforts: and also to say: Hey, you know what? I know you want to go create communes in the woods with farming and no modern medicine. It sounds great on paper, but I'm not gonna survive in that world. And so, let's please come back to reality a little bit and don't alienate our crew when really we need to be allies. Able-bodied people don't think about accessibility issues all that much, but when you bring it up and explain it, they go: Oh, yeah, that makes perfect, total sense.

So, just stay engaged. Reach your tentacles out. If you have friends and they are interested in something that doesn't seem immediately related to climate change, think about how it might be. Learn how the broader system works and all these pieces fit together, and then articulate it accordingly.

PACHECO: Thank you so much, Alex, and I love that little piece about reach your tentacles out. And Cathleen, I want to bring you back in here, because you certainly reached your tentacles out, really fostering this next door system for your neighborhood. And so, I just want to commend you on that and say that that's the kind of leadership that our community really needs. And the more we can get people to step up and start those networks the better. Any final thoughts you have, Cathleen, or advice that you want to give locally here in Nevada County to folks about how they can do that?

PARSONS: Well, I really think that we need to start with knowing who our neighbors are. And we can't wait for help, and we need to have a plan in place. And what does that look like? Not just for yourself, and just saying: Actually, I need help. That's really hard for people to say I need help, and how do I reach out.

PACHECO: That was FREED consumer Cathleen Parsons of Grass Valley. We also heard from climate and disability researcher Alex Ghenis, joining us from Oakland.

And that does it for this show, which was produced and edited by Carl Sigmond. Special thanks to Courtney Williams for her support. To listen to this show again, go to FREED.org/disabilityrap or wherever you get your podcasts. I’m Carly Pacheco with Carl Sigmond for another edition of Disability Rap.