Alex Ghenis: Discussing Climate Change and Disability Rights

An interview with Alex Ghenis — writer, speaker, advocate, and activist who focuses on justice for the climate and for people living with disability.

Words by Ana Yong

Introduction

Alex Ghenis is a prominent advocate for disability rights and climate justice, known for his impactful work at the intersection of these critical issues. As a passionate speaker, writer, and researcher, he emphasizes the unique challenges faced by individuals with disabilities in the context of climate change and advocates for inclusive policies that ensure their voices are heard in environmental decision-making.

With a background in both urban planning and disability studies, Alex brings valuable insights into creating equitable climate adaptation strategies that prioritize accessibility and resilience. His contributions to various platforms, including his thought-provoking articles and presentations, continue to inspire meaningful discussions about the importance of integrating disability perspectives into the broader climate movement.

In the article “Climate Adaptation, Adaptive Climate Justice, and People with Disabilities,” Alex highlights the urgent need to integrate disability perspectives into climate adaptation efforts.

He emphasizes that people with disabilities are among the most vulnerable populations affected by climate change, facing unique challenges that demand attention in adaptation strategies. He discusses the concept of “adaptive climate justice,” advocating for frameworks that prioritize inclusivity and accessibility, ensuring that disabled individuals have a voice in shaping climate policies that impact their lives.

Alex argues that effective climate adaptation must not only address environmental changes but also the systemic inequalities that exacerbate the vulnerabilities of disabled people.

He calls for collaborative approaches that involve disabled communities in decision-making processes, the development of accessible infrastructure, and the allocation of resources to support adaptive measures tailored to their needs. By fostering an inclusive dialogue, he asserts that societies can create more resilient and equitable climate adaptation strategies that protect all individuals, regardless of their abilities, and contribute to a just response to the climate crisis.

An Interview with Alex Ghenis

Here, we are privileged to interview Alex as he brings us deeper into his world of climate activism.

1. Could you share your journey into climate activism and how your experiences as a person with disabilities have shaped your perspective on environmental issues?

I acquired a spinal cord injury in 2004, just before my junior year of high school, and was lucky enough to attend the University of California, Berkeley two years later. Berkeley is the birthplace of the modern disability rights movement, has a strong disability community and instilled in me both deep respect for the OG activists and a drive to advocate however I can.

I also took a climate change course in my freshman year in the geography department and fell in love with it, so I studied geography with a focus on climate change while doing disability activism on the side.

I went right to grad school, studying at the Goldman School of Public Policy with a focus on renewable energy, then started working at the California Energy Storage Association when the storage industry was still in its infancy.

I had a few epiphanies while working there: that a functional electric grid is crucial for people with disabilities’ well-being and survival; that we are disproportionately affected by the climate crisis in countless ways; and that it’s critical we ensure resilience and sustainability don’t leave us behind.

In 2014, I started a blog on the subject in my free time and was discovered, then hired, by the World Institute on Disability as a research fellow. I led their climate efforts through 2020, then moved to private consulting at the beginning of the pandemic.

As a climate professional, a lot of my work – say, accessible disaster shelter trainings – feels like activism that helps pay the bills. I’m also a member of the Technical Advisory Council for the California government’s Integrated Climate Adaptation and Resiliency Program (ICARP) and a member of the Equity Working Group for the Bay Area Climate Adaptation Network (BayCAN), and use those positions to advocate inclusive, accessible resilience strategies in California (my home state).

Articles can also be activism, and in a throwback to 2014, I just started a new blog titled DisabilitYIMBY that looks at the intersection of disability, urbanism, and climate change. I think it’s important to zoom out and understand that the way we literally build and arrange our world affects both sustainability and climate resilience, especially for the disability community. 

I haven’t exactly done direct-action-style climate justice activism, but who knows what the future will hold. Check back with me in a few years.

2. Are there any misconceptions about disability in the context of climate change that you would like to address?

Well, there are lots! Climate advocates without disabilities too often neglect disability inclusion and equity, or maybe throw “people with disabilities” in as one of many marginalized groups – without bothering to look at any details.

This is a big issue because marginalized or “vulnerable” groups all have different exposures, characteristics and needs, so disability climate justice looks very different from racial or gender climate justice. For example, inclusive disaster planning needs to consider the provision of caregiving and medical services, while “green urbanism” must ensure universal accessibility (which goes far beyond ramps and elevators). 

I just think the “climate community,” which in my experience trends able-bodied, doesn’t have the lived experience or knowledge base to totally grasp the disability-climate connection. And a lot of that is about representation: there’s a reason the disability activist mantra is “nothing about us without us,” and the lack of disabled folks in the climate movement means our needs aren’t fully addressed.

On the disability front, I think the biggest misconception surrounds the medical and social models. Disability advocates tend to attack the medical model of disability, which in its purest form says that able-bodiedness is normal and people with disabilities’ physical and psychological differences are what disable us.

On the other hand, almost all activists frame things using the social model, which says that society’s lack of services and accommodations are what’s truly disabling. When it comes to climate change, though, it’s hard to ignore the very real physical and psychological impacts – and we need room for medical model framing around that.

For example, I have a spinal cord injury and my brain can’t tell my body to regulate its temperature (among other things, I can’t sweat to cool down). Put me next to someone able-bodied during a heat wave and it’d be impossible to ignore the physical impact; all the accommodations in the world couldn’t let me go about my day and stay healthy like that able-bodied person.

Now, the social model would say I deserve access to a well-insulated home and air conditioning to compensate, which is true, but that doesn’t help much if I’m trying to go about my day out in the world. 

Other “medical model” examples abound for different climate impacts and disabilities (a huge set of intersections). So, as important as the social model is, the “social model only” mentality simply doesn’t work when addressing climate impacts. This is a complex issue we must approach with nuance if we really want comprehensive resilience.

3. How do you see the intersection of disability rights and climate justice playing out in today’s activism landscape?

There’s right now and then there’s the future. At the moment, the disability community is rightly scared and has responded by growing its climate justice efforts. 

Much of it is focused on inclusive disaster readiness and response, which already has dedicated nonprofits and working groups (plus new ones popping up all the time). For example, I take part in the Partnership for Inclusive Disaster Strategies weekly calls here in the US, and the number of leaders on those calls has grown while the Partnership added daily check-ins for disaster updates and planning.

Still, there’s a major shortage of hands-on work even as national advocates host calls and issue strongly worded statements about inclusive planning. There could be much more direct action, mutual aid, etc. in disability climate justice – and we’re lucky that some groups, like New Disabled South out in the US Southeast, are taking that mantle and leading by example.

However, the major focus on disaster readiness and response stands in contrast to a lack of activism on climate issues related to housing, transportation, migration, extreme heat, and so on.

I always say that the climate-disability nexus is like having two columns: one with loads of climate topics (impacts, resilience strategies, sustainability efforts, etc.) and one with loads of disability topics and characteristics. You can draw countless lines from one column to another (e.g., the connection between sustainable public transit and blind folks’ independence) and each one would be a valid issue of disability climate justice. It just happens that a lot of disability resources go toward inclusive disaster planning while neglecting, say, accessible urbanism with well-insulated homes. 

On the other hand, disability advocates whose work tangentially touches climate (e.g., accessible housing  advocates) rarely use climate justice as a reason to further their cause. But each of these problems also presents an opportunity for new activism and better messaging. So, I’m hopeful things will continue to improve.

As for the future, I can only imagine that the number of advocates will keep growing, since climate change rears its ugly head more and more each month and people with disabilities continue to experience disproportionate harm.

One thing I’d love to see is more disability inclusion in the climate space. There was a memorable paper by a UK academic named Deborah Fenney where she surveyed Brits with disabilities about their experience in the environmental movement; the environmentalist community was overwhelmingly able-bodied, event accessibility was a frequent afterthought, and some environmentalists’ ideologies didn’t account for the survival of people with medical needs. But the paper did show that there are lots of folks with disabilities eager to be active environmentalists. If climate spaces just make the effort to be inclusive, they can have a lot of new friends and allies.

4. Can you discuss any specific projects or initiatives you were involved in that promotes accessibility within the climate movement?

I actually haven’t been a part of any projects that explicitly do that. I’ve spoken to plenty of climate advocates at conferences, on webinars, etc., explained the connection between disability and climate, then implored inclusion. On that note, I think simply raising awareness is a good first step and hopefully will help open doors for more folks with disabilities to join the climate movement. 

5. Do you feel that there’s a distinct “disabled climate activism” movement, separate from mainstream climate activism, and how did you arrive at this conclusion?

In a word: yes. There’s a disability climate justice movement just like there are other climate justice movements focused on indigenous folks, people of color, and other marginalized communities.  It’s also newer and smaller than some other climate justice movements, even though people with disabilities represent the largest minority population in the pretty-darn-diverse USA and are a good 15-20% of folks on earth.

I have talked with disability climate justice activists in every major continent, including solo trailblazers and nonprofit leaders. There’s a huge sense of urgency, especially in the Global South, to protect lives and independence. There’s also some understandable panic just because this is a new point of activism for many folks – and because activists are under-resourced, especially in the Global South, while the climate crisis is only accelerating.

However, just like with the general “climate activism” and other climate justice movements, the disability climate justice movement is not monolithic and can be a bit disjointed sometimes. It makes sense given the nature of disability: there are many, many types of disabilities and each group has its own characteristics and concerns, both in general and around climate change.

Then, climate impacts are different depending on where folks live. For example, the Bay Area’s Deaf community will experience the climate crisis differently than locals with mobility disabilities, and the crisis will hit folks in other states and countries in entirely different ways. 

That all manifests in disparate advocates and organizations fighting for their communities (whether that’s at the local or national level) but not a cohesive “disabled climate activism” movement per se. Still, I’ve found that we find ways to work together and have coalitions when it’s needed.

6. What is the single most important issue that individuals and organizations should be mindful of with regards to persons with disabilities and climate activism?

I honestly think the biggest “issue” is that folks with disabilities experience the world differently than able-bodied folks do, so the climate crisis hits us differently and we need to adapt accordingly.

Among other things, we are economically disadvantaged, socially marginalized, and have a deeper reliance on infrastructure and institutions than able-bodied folks do; so, the ways infrastructure and institutions are designed deeply affect our well-being, independence, and even survival. 

Everything about inclusive resilience and activism builds off of that. For example, when storms or fires lead to evacuations, folks with disabilities need appropriate warnings (e.g., for people with sensory or cognitive disabilities), accessible transportation (e.g., for folks with wheelchairs), accessible sheltering (e.g., with stair-free entrances and tall enough cots to transfer into), plus access to disability-related medical goods, medical care and social services for the entire evacuation.

And you can use the same high-level framework to evaluate the disability experience during heat waves, migration, climate-related economic disruptions, and more – at any geographic level, for any disability group or specific diagnosis, etc. 

In terms of climate topics, I think inclusive disaster response (which includes managing extreme heat) is the biggest one to be aware of; it also has the most published resources for advocates and planners alike.

But something close to my heart is accessible urbanism and how land-use is connected to inclusive climate resilience. For example, I recently wrote a blog titled Urban Form, Age/Disability, and Wildfire Evacuations in California that shows how our land use incentivized sprawl into wildfire risk zones while social dynamics have led seniors and people with disabilities to disproportionately live in harm’s way.

All this creates a deadly mix leaving seniors and folks with disabilities as a disproportionately high share of wildfire deaths. On the other hand, dense urban environments are more wildfire safe, trend disability-friendly and minimize per capita carbon emissions – creating a great combination of accessible climate resilience and low carbon independent living.

So, I think accessible urbanism is tremendously important, and also under-addressed compared to disaster response, which gets the lion’s share of climate resilience focus.

7. What role should mainstream media play in representing the voices of disabled activists in climate conversations?

Just do everything possible to include disability activists on shows, in interviews for publications, etc. Disabled climate activists are a relatively niche crew, each with our own niche focus areas, and most of us are good at explaining connections in ways that work for mainstream media.

We also represent a solid 15-20% of the population, so I’d say we deserve every fifth or sixth climate interview out there. I know people often find me on LinkedIn, and there are lots of other disability-and-climate activists that can be found on LinkedIn or other social media if journalists just take the effort to find us. We usually consider awareness-raising its own form of activism and are happy to chat.

8. Should disability rights organizations play a part in advocating for greater inclusion within the climate movement? Why do you think this is so?

Of course they should advocate greater inclusion! Climate change is an existential threat to humanity, and folks with disabilities are on the front lines getting hit first and hardest. Many folks with disabilities understand we are under threat and want to help fight the climate crisis, whether that’s reducing emissions or building resilience. So, the more doors can be opened to climate activism, the more people with disabilities can fight, and the more likely it is we’ll survive and thrive.

Climate activism will happen with or without us, though. So, for disability justice’s sake, we should be a part of the movement to ensure that whatever clean future gets built is accessible. The last thing we want is some piece of clean transportation infrastructure with a 100-year operating lifespan to be inaccessible. We should be a part of the climate movement to ensure resilience is accessible. Nonprofits fighting for disability inclusion in climate activism would be fighting for our future.

9. Given the current challenges that people with disabilities encounter when participating in climate activism, what could be done to make this more inclusive for disabled activists?

Honestly, I’d point you toward Deborah Fenney for the best answer to this question. 

My two cents is this, though: climate leaders should engage with local disability leaders to learn about accessibility and create inclusive spaces. Making activism accessible and inclusive isn’t a big lift. It just takes an open mind, a bit of learning, and some reasonable accommodations. And engaging with local disability advocates is the best way to meet the needs of the local disability community.

Climate activists should also set aside some funding – or do some fundraising – to provide accommodations as needed. For example, captioning and interpreters for Deaf folks aren’t cheap, but leaving them out abandons potential climate allies and tramples on equity.

Smaller organizations might find grants or sponsors for accommodations, while local disability organizations might help through partnerships. Searching for accommodation support never hurts, and it also demonstrates to the disability community that you care.

10. What advice would you give to aspiring activists with disabilities who want to make a difference in the climate movement?

I think step one is to learn climate and disability basics. If you want background reading, I’ve assembled assorted articles and papers at my website www.accessibleclimate.com, and there are other sites with solid resources if you just do some Internet searching.

The second step is to hone your own story and build something compelling. Don’t be afraid to share how you personally will be affected by climate change and how that’s different from your able-bodied neighbors. Stories are powerful, especially when they are paired with frameworks to understand larger issues (e.g., the column of climate issues connected to the column of disability topics I mentioned in an earlier answer).

Third, don’t be afraid to lead, or at least find someone you consider a trusted leader and pull them into the climate justice movement. We need all the leaders we can get, and there’s a shortage in communities worldwide. So, take the mantle and make a difference.

Finally, take care of your mental and physical health and your own climate resilience. Maximizing your personal well-being (to the extent you can) is crucial to being a successful climate advocate. And the dual stresses of worrying about disability – your health, social stigma, social services, etc. – and worrying about the climate can take a toll, especially when you realize how the climate affects you as someone with a disability.

As I tell all climate activists: take care of yourselves, because self-care will make you the best advocate possible.

In Conclusion

We wish Alex continued success and impact in his tireless advocacy for disability rights and climate justice, and look forward to seeing the positive change he will continue to inspire in the years to come. We are also grateful for his willingness to share his experiences and insights with us, offering valuable perspectives that will enrich our understanding of this critical intersection.