An Interview with Alex Ghenis, Disability Climate Change Activist
Climate change is on our minds. Our world is rapidly changing, and the effects are apparent. With weather changing, storms raging, heat rising, and unprecedented cold spells, those of us in the disability community are particularly concerned. Climate change impacts us in unique ways.
Meriah Nichols talks with Alex Ghenis about his work in climate change, specifically with the emerging frontier of disability climate change justice.
Interview Transcript:
This transcript has been edited for clarity.
Meriah Nichols: Hi, Alex!
Alex Ghenis: Hi Meriah!
Nichols: I’m going to do a just a brief introduction. So Alex Ghenis, Master of Public Ppolicy from UC Berkeley, is the Deputy Director at Sustain Our Abilities, a nonprofit focused on the intersection of climate, health, and disability. In 2014, he started the New Earth Disability initiative at the World Institute on Disability and was one of the first advocates to work on disability climate justice. Alex joined Sustain Our Abilities in 2022 and is focused on disability and climate education, policy, and community action. He has had a spinal cord injury for 18 years and resides in Oakland, California. Thank you so much, Alex, for joining me today and talking about this, I really appreciate it.
Ghenis: Yeah, Happy to be here.
Nichols: I was wondering if you could talk a little bit about the new Earth Disability initiative at the World Institute on Disability – like how did it come to be? How did it emerge?
Alex Ghenis: Yeah. So you mentioned my degree… when I showed up at college it was a couple of years after my spinal cord injury and started political science…then my course of study pivoted to geography – I was really interested in climate adaptation and getting ready for climate change. When I did my masters, I ended up kind of pivoting toward renewable energy and started working in the energy storage field.
I was working with scale batteries, big batteries that will connect to the electric grid and make it so that when the sun is, you know it’s a partly cloudy day that it can, you know, kind of even out how much electricity is coming out of those solar panels, because whether or not the sun is shining, you want a steady output.
So, I was working there and had a bit of an epiphany just about the importance of the electric grid. And then all these broad systems in the world for people with disabilities… so I started writing a little blog. I called it New Earth Disability. It was a word press blog, or something like that I forget which one. I got noticed by some of the staff over there at the World Institute on Disability, and pivoted from that energy storage field over to being a research fellow at WID. And that’s where I was coming from, when I started New Earth Disability. It was a blog. It was a newsletter. It turned into research while I was at WID. It wasn’t just talking about climate change as in okay, there’s going to be these disasters that hit us, and we need disaster readiness. It was more all encompassing. It was covering topics like infrastructure, and the built environment. It was covering climate migration.
I touched on heat waves, extreme heat, and how that relates to say, people with disabilities, access to air conditioning. Which is very different than what was at that point kind of a growing focus by a good amount of stakeholders on disaster, readiness, and response, which, again, I care about and is really important. And while I was there at New Earth Disability, I was eventually out doing a good amount of community engagement presentations in the nonprofit world. And I’m sure you know you also kind of go where grant funding is available. We found some good grants on disaster, readiness, trainings, and education. I helped out with the existing contracts doing disaster staff training for Red Cross shelters.
Here in California we did a couple of larger projects. One of the ones that I was the lead on was a project looking at transportation for people with disabilities in the San Francisco Bay area, and I bring that up, because with transportation, there’s a few other larger societal infrastructure and services things that fit into a couple of different sides of climate change.
So and this I think we’re going to talk in a minute about really what is kind of disability, climate, justice. But if you can imagine within the transportation field, you have concerns about the sustainability of transportation and the transportation system to reduce carbon emissions.
We want people to have good access to a fixed route with public transit. We want them to really have access to denser communities and good transit networks. We don’t want them driving a lot. But you know, some people with disabilities, especially in more kind of less urban areas and less urban parts of the bay area they don’t necessarily have great access to fixed through transit. A lot of the bus stops are not wheelchair accessible, or there isn’t a good sidewalk going up to them. We looked at that, and we said, okay, first of all, how do we change the system to create better quality of life for people with disabilities, but also to help provide access to a lower urban footprint transportation. And then we didn’t talk about this so much during that project, but it’s a concern – what does transportation look like for people when we are running into more climate extremes? How do you navigate fixed root transit if there are such extreme heat waves that just going from your home to the bus or the you know, here we have BART – The Bay Area Rapid Transit to the bus or the BART stop is kind of unbearable. What if you have a disability where you have thermal regulation issues and getting to that fixed through transit stop is difficult. What about you know during extreme heat events? Sorry. Not extreme heat. I already talked about that. What about during storms right, and a lot of rain. What? What does that mean?
And then you know, if somebody can’t get around on fixed public transit, how do you provide transit? That, then, is it easier for them to implement another transit. So there, there’s that’s just an example of kind of one of these really dynamic systems that we tried to look into, that we tried to understand that we tried to educate that, we tried to formulate policy of how to kind of make people’s lives better and have a lower carbon footprint.
Nichols: Hmm.
Ghenis: Yeah.
Nichols: thank you. Well, so is that just with New Earth Disability initiative, or is that also with Sustain Our Abilities?
Ghenis: Yeah. So New Earth Disability that was its own project. That would that one I left with in 2020, really right at the beginning of the pandemic, and started some consulting work on my own. And you know, just did some cool projects along the way, and then I’ve known Marcalee Alexander, the chair of the Board of Sustain Our Abilities for a while.
We met around some other disability, related work a ways back, and we connected, and Marcalee had started this nonprofit Sustain Our Abilities back in 2019. Actually, it started out as a different under a different name, but then really pivoted toward doing more climate change, related work, and I was talking with her in 2022 right around the year ago. This time, maybe a little bit later. She said, hey, you know what I’ve got this nonprofit. We have a fantastic team of partners and volunteers around the world. They have a, you know, just an annual event called Day for Tomorrow, which is about climate and disability, education. She invited me to come on as the deputy director, and help this nonprofit really grow from being a having a law of volunteers to growing, doing more projects, having more concrete projects with which we have some things in the works on that front. So, coming in to sustain our abilities, you know it’s a different entity it has a lot of the same kind of goals it has what I’d say like a two – she is a physiatrist – a physical medicine and rehabilitation doctor – Sustain Our Abilities is focused on climate, health, and disability. So Marcalee also, you know, and this is separate from the organization.
But just to give you an idea of where her background is, and then also kind of what the health side of things are is. She is the editor of the Journal of Climate Change and Health. and she started that. So that’s an academic journal that talks about things like extreme heat events, and their impact on people with spinal cord injuries. To use a personal example, someone in my shoes can’t sweat to cool down. Also, you know I have issues with circulation. So in extreme heat and extreme cold, I’m at risk of either overheating and having, you know, heat, exhaustion, and heat, stroke or in terms of cold, of having my body temperature drop a lot, and then not really impacting my well-being so, she would come at that from the health side of things, and then for me, coming out from the disability, rights and policy side of things, I would say, all right, then, how does access to air conditioning for people with disabilities play into this? or you know good quality, well insulated, accessible housing, and what are the kind of social aspects of it.
So what we’ve done is so far we’ve put together and are continuing to kind of put together educational events and series. I’m not sure if it’s on our website. We need to put it up, but it was in partnership with the global consortium for climate, health, education and it was a 4 week workshop for health professionals, on connections between climate, health, and then also, we touched on disability.
In a couple of those weeks, we worked with them to put on that event focused and targeted toward health professionals. Now I’m working with Marcalee and a couple of our volunteers to do another series of just kind of educational events on climate change and disability targeted for the disability community, and other projects that we’re looking on for the future might be some initiatives, like look looking at disability, employment in renewable energy, and other parts of the green economy. Right? my goodness! I just blanked on what some of the other things on our to do list, are we’ll come back to that when they come to find. Wow. All right. There, that goes. So yeah. But that’s a way, you know. Yeah.
Nichols: Okay. I just wanted to get this a little more clear in my own mind, because I’m: I just because I thought you said that there was a two track plan, is that right? So the 2 tracks: one track was working with. like the “now,” like the housing, accessible housing, like the climate pieces that are related to housing. Is that right?
Ghenis: No.
Nichols: What exactly are those 2 tracks again?
Ghenis: Yeah. So let me try walk you through this because I think if you go to our website and you go to the blog and just invite the people looking at this video. And then, you know, if you write things up about it, we have – I’ve written it’s a 3 part blog post right? No, it’s actually just a 2-part piece on how to think about climate change and disability. And one of them is basically you’ve got a bunch of different aspects of climate change and a bunch of different aspects of disability and climate change. You know you’ve got renewable energy. You’ve got housing. You’ve got transportation. You’ve got a natural disaster, and what those will mean different types of natural disasters, disability. You have different categories and disability. You have social stigma. You have economic inequalities, every little connection that you have between one side, the climate thing and one side of the disability thing. That’s a thread of the climate and disability puzzle. That’s a piece of the puzzle right? And then, when you’re looking at a specific, say category of disability. and then a specific climate impact.
You can break up that category of disability into kind of like the medical and physiological aspects of it. So, for someone with the spinal cord injury, you know, I’m temperature sensitive and if you’re looking at spinal cord injury and extreme heat on the medical side you have, I mean it’s straightforward, if it’s too hot, I have a harder time with it than an able-bodied person does right I’m just outside hanging out with my able-bodied buddy, there’s a really hot day. I’m going to have a harder time that my able-bodied buddy, who can sweat and because I can’t sweat.
And then on the social side you have, you know, people with disabilities are economically disadvantaged compared to able-bodied folks, and that means we might have less money to get housing that has air conditioning, or to, you know, air conditioning and good installation. Or, that we don’t have as much money to afford a high air conditioning bill in, you know, during a heat wave so this is where Marcalee steps in with her background. This is the health side of the climate, health, and disability stuff that we work on is. Then the Social and disability rights side of it which is kind of the stuff that I work on a little bit more. And the stuff where we’re going to really try to education disability stakeholders and activists is what are those housing and economic issues that make dealing with extreme heat more difficult. For people who have spinal cord injuries or for anybody with a disability who you know, really wants air conditioning during a heat wave because the medical side is really disability specific. I think the social side, whether someone with a disability is temperature sensitive or not we still, all you know, are frankly, economically disadvantaged. and many of us have specific, accessible housing needs.
That means that all of us are probably, or at least disproportionately going to run into those barriers of finding good housing and affording air conditioning bills, or, you know, maybe getting to a cooling shelter and finding one that’s accessible and getting transportation to that cooling shelter. So those are like the 2 sides, the 2 pieces of the puzzle the medical, and then they’ll like social disability right side.
Nichols: Oh, Gotcha. Okay, Thank you so much. I’ll be sure to link that post into this video.
Ghenis: Yeah.
Nichols: Thank you so much. So I’m just wondering, you know. Can you? Can you tell me a little bit more about what disability climate justice is?
Alex Ghenis: Yeah. I’ve already kind of broken down some of it, you know. Disability, climate, justice for me is first of all, making sure that existing climate action considers the needs of people with disabilities and allows us to be active participants in the process, right, invites us to be active participants, or that we, as disability activists charge to the front and say, make us active participants here, which is kind of the history of so much of the disability rights movement is demanding change and demanding participation and getting it so that that’s just kind of a very straightforward thing.
I’m a little bit bummed that so much of the time when I show up to climate related events and activities, I’m the only apparent disability stakeholder there, even though people with disabilities are 15 to 20% of the population right? And here I am in these groups of potentially a 100 plus people, and there might be some other folks with disabilities there who might not have visually identifiable disabilities, but aren’t part of a specific disability group, and bringing forward the concerns of the disability community. It’s like, okay, you know they have whatever disability they have, but they are working you know, on a county’s utility plan. They’re just a county staff member that has a disability. But isn’t bringing that to the table so that’s first of all active participation, bringing forward our concerns, making sure that that we are a part of that conversation, and then educating our community to be active participants.
There’s kind of an existing burden put on people with disabilities to prepare for climate change in a way that meets our needs. and flipping that on its head, and then demanding and making it so. That policy is responsive to our needs. so that we don’t necessarily have to figure out transportation on our own, and evacuations on our own that we are, you know, either. Really the system is set up so that transportation is very immediately accessible to us. Shouldn’t have should need for an evacuation come up or that we are given the resources ahead of time to better prepare for it, and you know it’s not kind of what you’d call like an unfunded or an unsupported recommendation, or mandate that we have concrete support to set up our own. You know evacuations. So It’s very much piece by piece to because I was mentioning the column of climate change issues, and then the column of disability issues, and how each one of those connections and threads is a part of the climate disability puzzle.
So I think that the yet another component of climate and disability, justice is identifying those threads, strengthening them, and then where they are already being addressed and articulating that this is part of the climate disability, puzzle. Vocally making sure that it is included in the climate change action is happening around us.
For example, right now there is not anything, any fully electric wheelchair accessible minivan on the market. There’s a battery electric hybrid. I think it’s a plugin hybrid, and that’s the only one that you know. Out of all the ramp van manufacturers, there is only have one hybrid.
So for someone with a disability who, you know, has a van. either out of choice or out of necessity based on where they live. If they don’t pat, and they want to be climate conscious in their own life, they want an electric vehicle. If they don’t have access to that then that’s kind of locking them out, and I think that the as soon as someone provides an all-electric accessible, many band that even that is a piece of the climate disability just as puzzle it. It’s I don’t know it’s dynamic. It is a big puzzle. It’s a web. I wish I could articulate it a lot quicker than that. I probably could do it without using anecdotes. But yeah.
Nichols: well, I’m really glad that that I’m so happy to have that, you know fleshed out a little, because I think when I think of the word justice, I’m always thinking, you know court system, you know, which goes in to the next question like, how do you law in policy fit in with this?
Ghenis: Yeah. I think so obviously. There are international disability rights frameworks. There’s the UN Convention, and there are disability rights laws. The Americans with Disabilities act here in the United States there is disability, rights, philosophy. There is concepts of universal access and providing that I think anytime that those can be included in climate policy the better if there’s ever, you know, again coming back to the transportation and the accessible Van thing, I think if there was an I don’t necessarily have the language in mind right. But if there is any sort of law that would help accelerate the production of all electric, we all try accessible vans like the better. anytime that there is policy that that improves access to public transportation that improves access to quality. Accessible housing that improves, you know. Possibly economic supports around air conditioning during extreme heat events. Then that’s good policy.
There are examples of in terms of practice and policy like here in California. The centers for independent living have worked to assemble warehouses of portable battery Generators that then can be distributed to people with disabilities, with electricity, needs especially like ventilators and other life sustaining equipment whenever we have the power outages that are supposed to prevent wildfires. And I say, by the way, for people that are reading, or watching, or listening to this that don’t know. Here in California we have fire weather, and sometimes trees will fall over, hit power lines catch on fire spark a wildfire. So the utilities to prevent wildfires shut off entire portions of the grid, often in suburban and rural areas to make sure that a fire doesn’t start there when it’s really hot and and windy. But if somebody has a ventilator or other medical device need, and that goes down that can endanger their health and safety and survival. So a policy that came about is the independent living centers assembling this cache of batteries that then they can deploy on the head of these public safety power shut offs. So that’s a policy, right?
I think that I really this kind of comes into what I was talking about earlier, where I wish that I could have like a concrete, quick statement, for this is what this is. I should probably write one up and figure out how to articulate it faster. But it it’s piecemeal. The policies for disability, climate, justice, are a piecemeal, and they have to really show up everywhere.
I think that there are. There are the high level policies which is ensuring that you know anytime, that there’s something written into law about climate change and equity. that it includes disability, right? That’s like the high-level legal policy stuff, anytime that we do in the disability community that we try to have broad-based disability rights related stuff. If we can weave in climate, justice and equitable mitigation and the adaptation that’s good law anytime that we could weave in nods to climate change in transportation work.
Then that’s disability, climate, justice going into law and policy. So you know, yeah, it is. There’s high level, and then there’s kind of the piecemeal. Whack them all piece.
Nichols: Thank you. For explaining that. It seems like it’s a lot less complicated than I think I made it in my head like I think I made it a lot more difficult and complicated than it actually is, like. What you’re saying is just to me. It sounds like largely just a matter of being eminently practical and like prudent and really thinking about what we, as a cross facility, community need, and our you know our access needs, like you’re saying and really preparing for it.
Ghenis: Can I jump in really quickly, because this brought to my mind. One of the things I didn’t bring up is I mean there are a couple of parts of of this puzzle that I didn’t bring up, that I think are really important at the high level there are issues around the economy. Climate change is already disrupting the economy. It’s going to continue disrupting the economy, and government is having to and we’ll continually have to make tough choices about what to do with. You know a combination of shrinking budgets or at least more slowly growing budgets because of climate change, right as it knocks it off of GDP and I how to make up for are really what end up being like larger outlays due to climate, related harms. like government, is going to be spending a good amount of money on repairing damage from storms and other climate disasters and probably transforming infrastructure to be more resilient to climate change and you know, as climate change becomes more and more urgent, transforming infrastructure to have a lower carbon footprint on lower environmental footprint. But what happens to social services when they are doing that budget dance? And that worries me.
I think that the disability community really needs to be cognizant of the fact that, like everything that we’ve worked for, and we’ll continue to work for around independent living around. Financial equity is going to come under stress because of climate change. We need to be cognizant of it. And I think that as we are pushing for you know more workforce supports to help people who can. you know, work? Be more economically independent. like as we’re pushing for things like that having that light a little, a little fire under us to say, hey, you know what actually climate change is going to you know, put economic stress on everyone and for those of us that you know, can have a a few more bucks in our pocket through equitable access to work like that will be good for us in the face of climate change and government.
This is actually going to be good for you, because we might. You know. Those of us who can work, you know, might be taking a little bit less money from government services if we make that jump, and then a little bit. You know the budget will be a little bit better balanced to support those of us with disabilities. Who can’t work, or you know otherwise, are enabled to kind of, you know take up a little bit less government support that way. So you know that that’s I think that’s something that we need to focus on, that we need to recognize. Climate change creates a whole lot of urgency for our community to really keep working and fighting for the things that we have fought for and care about another. One is really kind of just like large scale upheaval and migration.
We had one fire season in California a couple of years ago, where we lost like 9,000 structures in a year across the State, and Not all of those were homes. A lot of them were homes. Some of them had multiple people living in them. So all of a sudden you’ve got you know, but what 20,000 people I don’t know what quite what the number is, but it would be a good amount displaced and homeless in one fire season and they either have to rebuild or they have to move somewhere and it’s probably going to be harder for them to rebuild in fire country because the insurance companies are starting to not cover fire insurance and high fire to enter areas anymore. So where do they move? I have been increasingly active in kind of the pro housing movement in my part of the Bay area, because I think that Oakland and Berkeley are relatively climate safe areas in terms of at least, if you’re not in the hills in terms of fire, and also in terms of extreme heat. And I think that you know we need more housing to accommodate migrants. Right? I think that we need to.
It would be who the disability community to kind of hop on the pro housing bandwagon, and obviously just in general fight for affordable housing. I think that the fight for affordable housing shouldn’t come at the expense of like just allowing market rate housing to pop up to cause that has its place in all of this, and new housing and new apartments are more accessible than old housing is. So you know all of this kind of. And then denser urban housing has a lower carbon footprint than people living in more sprawl filled areas. So like, I think that housing and kind of new urbanism is another area where the disability community could get more involved. It’s a really heavily kind of able-bodied space and I think that some of the conversations around market versus below market rate housing causes some tensions, you know So that’s something that we all need to have conversations about. I’m happy to have conversations. There’s another blog that I did on the website about housing, climate and disability. and then also, you know, international human rights around climate migration. It’s also going to be huge, even temporary displacement.
There’s the bill. The Disaster Relief Medicaid Act, that, I think, is still is going to be popping back up, and we’ll make it so that people who are displaced across state lines still have access to Medicaid services, and I, Home and Community Based waiver Services, because right now, even if a Federal disaster declaration is declared, if you hop across State lines, for I think anything to be out emergency health care. You can’t get it.
So people are just left entirely in a lurch if they have to evacuate to. You know a family Member’s house, or, you know, otherwise just get displaced across State lines. Those are some examples of policies that I think are also really important for us to focus on. And yeah, international migration, human rights, anything, anything around human rights is going to be other more climate just to see work. So yeah. I know… anecdotes. I could just like, go down the list of things that we need to care about, but those, I think, are some big ones that I forgot.
Nichols: So they No, thank you for them. And I’m wondering how would some of those broader actions translate into maybe smaller actions that those of us in the disability community can engage in like. What? What are some everyday actions you think that we can take?
Ghenis: Well. I think you know, understanding it. It’s just important to learn about climate change in general, and then to try to learn about climate change, and just like what it means for your local community. So my experience here in the bay area is going to be different than yours is, you know, in Hawaii in terms of climate change. Some of the stuff we’re going to. You know. We’re both going to be dealing with flooding concerns, you know. Drought might come and go. Hawaii has trees, and you know there’s forest fires out there right, but otherwise like there are different things between us.
Oakland is different than just on the other side of the hill. in terms of fire and heat or farther into California in terms of flooding and fire. Learning about the local is really important, preparing in your own way for whatever relevant disasters might hit you always having a disaster readiness plan looking and considering long term, you know, if you end up moving, for whatever reason you don’t like your landlord, or you know you’re just looking to move for whatever you got a job in a new place. Think about how housing and transportation will fit into your own personal life, and in relation to climate, resilience and then also living as a low carbon footprint a lifestyle as possible. I think that really, any time it’s really empowering to try to live a low carbon lifestyle like I do my best. right and just knowing what that does for the world. I think it’s really valuable. I think that people with disabilities have been turned off from the environmental movement, because there’s some kind of ableist idea and rhetoric. And oh, let’s all go out and enjoy nature, and it’s like No, I can’t get on a mountain bike, and you know, or go hiking with you guys like go and enjoy nature on your own. I’m going to stay here in the city, and also kind of like a weird conflation with nature and climate. When really there’s ways to live sustainably without it being super based in nature if that makes sense. Live sustainably. Prepare for whatever local climate impacts you’ll have. Get a disaster readiness, kit. Consider housing where and how you live, and then see how you can get involved, even if it’s in a little way. and a whole lot of politics is local. If you decide to get involved. See if you can, you know, Talk about climate change with your friends, educate them. Look at some of the resources we have created on Sustain Our Abilities.
We’ve put together a 170 some odd, relevant kind of resources, and you know, like there’s a climate and heat section that has learn about climate change and heat, and then learn about heat and disability. Right? So educate yourself about how all of those things come together.
That was a lot that you can do at the local level. I go to city planning commission meetings and talk to them about climate change, like: hey? Guys: here is why I think you know, for climate reasons, you should try to plan the city this way, and then also as someone with a disability I care about that and how it fits into climate change, and for me to be able to show up to that meeting and give a two minute public comment. I’m the only person that those meetings pulling together climate and disability, and whatever topic that they’re focused on. Right. So just be that voice in the room. And yeah, you can. You can be a good activist.
Nichols: Thank you, Alex. These are fabulous pieces of advice, and really looking forward to digging up those links and including them, and reviewing them myself. It’s definitely an education. There’s a lot there.
Ghenis: Yeah. You could read all day about this stuff. And yeah, there’s a lot going on.
Nichols: Yeah…Well, thank you so much for your time. I really appreciate your making the time for this interview, and for all your shared wisdom and knowledge and experience. I really appreciate it.
Ghenis: Yeah, Absolutely. Thanks for talking with me and to everyone checking out the recording. I hope this is helpful.
Nichols: Thank you! Okay. Bye.
Ghenis: Okay, Bye.
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Meriah Hudson Nichols is originally from a sheep ranch in Cloverdale, California, but grew up in countries around the Pacific Basin. She studied education, human resource development, training, and project management and spent over twenty years in careers with connections with her degrees. As a deaf woman, mother of a child with Down syndrome and daughter of a woman with fibromyalgia, she is passionate about disability rights, education and employment. In her spare time she writes, takes photos, paints and travels.