What I've learned in conversation

Kia ora Debriefers,

Áine here, coming to you after a rejuvenating summer in Aotearoa New Zealand. 

Throughout the past year, so many disabled people have helped me weave together disability and climate justice here on the Debrief, and via the Enabling Commons podcast. I'm lucky to have had the time, energy and funding which have enabled me to explore these topics.

In this piece, I'm reflecting on the Enabling Commons interviews with disabled scholars, artists, advocates, collaborators and frontline workers. Common themes recurred throughout, from understanding our own connections with the natural world to documenting our knowledge and showing up for each other.

Disability Debrief is supported on a pay-as-you can basis. Thanks to Chris, Federico and Lucy for new contributions.

Traversing the waters of climate illness

Before I came back to Aotearoa New Zealand, I was living with long Covid in my room in Norway. I sometimes felt so disconnected from the environment outside, as if I wasn't part of it any more. 

Talking to Hanna Cormick brought into focus possible reconnections. An Australia-based artist with Sami roots, Hanna explains that she's spent the past eight years “located in an isolation room on unceded Ngunnawal and Ngambri country in Canberra, traversing the deep inner waters of climate illness”. 

Far from this pulling her away from the environment, she articulates how living with extreme sensitivity to polluted air and airborne contaminants has brought into sharp relief her relationship with air quality, with people, and the wider ecology. Those of us brought up in colonial societies are, like me, often less attuned to those intrinsic connections that exist regardless, and which are not remotely contingent on any stereotypical white, able-bodied forms of environmentalism. 

“We're microbially, immunologically stitched together as one organism,” Hanna says. “And what I do to my body, I'm doing to yours, what I put on or into my body, I'm putting on or into the air, the ocean, into your lungs, your veins, and vice versa. So my medical condition illustrates that reality in a very stark and unavoidable way. But it's true for all of us.”

In the Debrief edition about just transitions, I featured the work of Pavan Muntha, a blind Indian climate resilience trainer. He elaborated on disability and human diversity as just one interconnected part of a fabric of wider ecological diversity:

“The major difference among species is about their mobility and communication. Right? [... And ] if you take the larger parts of species diversity, you see that there are several trees with different sizes, shapes and different spread, and different rooting systems. And then, penetration into the soils, consumption of the resources of nature, like rivers, there are different sizes of surface water, ground water. And then, you go for these mountains. There are different climate zones in which you see different kinds of rocks and rock formations. So, in that way, you know, human beings are a part of that larger, diverse ecosystem.” 

Pavan also emphasises passing on the inherited knowledge and farming practices which tend to the health of both the land and ecosystems, as well as the farmers and their communities. I'm reminded of a Māori proverb which speaks to this interconnectedness - “ko au te whenua, te whenua ko au”, “I am the land and the land is me”. 

A complex relationship between nature and wellbeing

In many of these conversations, complex relationships between our bodies and nature emerge. When I interviewed Dr Sasha Kosanic, a disabled climate ecologist, I asked her to describe her field of Cultural Ecosystem Services in plain English. The word “services” sounded rather exchange-based to me, but Sasha elaborated on them in a way that sounded a lot more like interdependence:

“If we go to one spot in the mountains, some of the people can get there. Some of the people with different disabilities cannot get there. Whether we are enjoying the view, or we’re enjoying the smell, or we’re enjoying the sound of the birds, we should be able to be there. Right? All of us. When we create relationships with nature or anything else, we care for this object—nature or person. And to be able to care or to advocate for environmental change, we need to have this relationship [...] to care for nature more and make more adequate conservation policies.”

When I was sicker with long Covid, there were stretches of time where I did not go outside for weeks. Sasha says it's important that access to nature is first and foremost your physical presence in it, but I know disabled people have been pushing those boundaries out of necessity. 

I'm reminded of the book The Sound of a Wild Snail Eating by Elisabeth Tova Bailey. Through her ability to watch the snail from bed when literally any further movement was not possible, the author builds up an intimate knowledge of its life. She ensures it's carefully tended to in her bedroom, keenly aware that the snail is no longer in its most natural habitat. 

I also talked with Tori Tsui, a Mad-identified Bristol-based climate activist from Hong Kong. Tori is author of the book It's Not Just You, about the relationships between mental health and climate justice. During the period of needing to live only from my bedroom, I felt for a long time like digitally-recorded nature soundscapes “didn't count”, weren't the real thing. But the conversation with Tori reminded me that they too were “part of nature”:

“The way in which able-bodied access nature, I think is kind of portrayed as the archetype. And that is ableism in and of itself, right? That these are the experiences that define what it means to be with nature. And the reality is that it's so much more complex than that. [...] as human beings with different connections and we live in a digital world as well, where I think it's so important because there's accessibility with having digital networks as well.”

Afterwards, Tori kindly pointed me to earth.fm where you can listen free to an abundance of nature audio. 

Sharing our stories

As someone who is focused on sharing stories, it was meaningful for me to connect with two other disabled people dedicated to this. Urban mobility researcher and collaborator Karina Cardona worked with Canada's Prairie Climate Centre and others to co-direct the film Cripping Climate Adaptation, where disabled people share insights about the importance of climate justice including the need for accessible cities for efficient emergency response. 

Karina used the film as a jumping off point for continued advocacy, its reach having now extended to federal environmental and climate policy-makers in Canada, as well as city planners. It's a good example of maximising the influence and learnings from one story-sharing initiative. She's now planning for the next iteration of the project to respond to questions these groups have and to focus more on equity. 

Another part of documenting knowledge has to do with giving names to the phenomena we experience. Karina describes how the term fossil fuelled ableism emerged in conversation with her graduate advisor Dr. Jeff Masuda.

“There’s a real departure in the expectations of what people's bodies are for, when the Industrial Revolution came around. And so moving from, let's say, more agrarian or primary industries where people were living a different kind of life, where life was guided now by machines and enabled by fossil fuels, where really it's like our bodies started becoming used as labor for profit. [...] Along with that comes like a moralization of health; this idea that if you aren't taking care of yourself in a certain way, then you're not doing a good enough job—you're an irresponsible citizen.”

I appreciated this reflection because there is power in making a lexicon around the phenomena which link ableism and climate breakdown. In short, the extractivism that fuels climate breakdown is the extractivism that devalues our bodies and minds.

Another master of sharing is Dr Julia Watts Belser, who recently spoke with Peter on the Debrief. Julia dreamed up and created with others the Disability and Climate Change public archive project. It's a treasure trove where you can virtually explore the pearls of wisdom which are refined, in an iterative process, by Julia and her students from conversations with disabled first responders, artists, activists and more. 

Julia's intention was for the archive to go beyond victimisation and harm. This resonated with me because I feel its absence in the vast majority of the disability and climate academic literature. In Julia's words:

“I spend a lot of my time thinking about and documenting violence and inequality. But this project has also become such a compelling way to recognize the way that disability communities, disabled folks. We are investing in one another's survival. We are working to lift each other up, often with so few resources. And that matters to me, that is powerful.” 

Your presence is providing a message

As disabled people, our presence has the potential to  influence or unsettle those who assume nothing was missed in our absence. And, importantly, to make it easier for other disabled people to feel comfortable reaching out to us. Sasha talks about the importance of disabled role models in attracting disabled participants to STEM subjects:

‘It's always easier if you are 17, 18, 19 and you have a role model in this department who you can turn to and say, “Okay, I have this problem.” [It] would make teenage kids who are thinking about going to university more open [to say] “Okay, this university is really open; they already have staff with disabilities, so maybe this is the place for me to be.”’

At university I was fortunate to receive an award, and have it presented to me by the Dean of the Arts faculty, who also happened to be blind. If felt special, like a sort of lineage in action, to to receive an award in a mainstream setting and it be handed over by another disabled person.

Blind disability consultant Mostafa Kamal Attia also speaks to the value of disabled people's presence, this time in conference and policy-making discussions. As well as the concrete issues he discusses, he emphasises that “your presence as a disabled person [is] providing a message.”

“Your presence as a person with knowledge and work experience and professional experience also provides a message. And if you have public speaking skills that also provide the message, which is important because you need to be convincing to others as well—not only to ask them to abide by policies.”

Often it's not accessible or possible for us to be present in physical spaces like these. Indeed, the majority of my own work wouldn't happen at all if it couldn't be virtual. But I think Mostafa is right in pointing out the power of face-to-face interactions. Many connect better with what accessibility or inclusion means when they see the need for it as part of a relationship.

To enjoy their rights like anyone else

In the Debrief edition about climate activism, I talked about the disaster risk reduction (DRR) advocacy of Nelly Caleb from Vanuatu. In Vanuatu, natural hazards turning into disasters is now the norm and organisations of persons with disabilities are regularly engaged in first response work by necessity. Food insecurity has become an acute issue for many, propelled by the economic impacts of the pandemic. 

Nelly points out that in the Pacific, it's not easy feeling comfortable coming forward to ask for help due to stigma and family shame around disability. She talks about the effectiveness of “snowballing” - drawing on community networks for people to learn that there's a low barrier to receiving food and other assistance from volunteers. What it means to show consideration and care to our communities is inseparable from the cultural context we live in. 

Nelly's organisation, the Vanuatu Disability Promotion and Advocacy Association, combines this community-based work with an ask for social welfare benefits after disasters:

“[I]n these times, they’re really discriminated in a way that maybe their homes are destroyed, and they've been living with their families. And now, I believe that their families discriminate them in a way—maybe giving them food once a day, or even chasing them away from home. That's the experience that they have. And it’s really important for these social welfare benefits to be in place to all our members during these times[...] because now, the water systems are no longer used, and people really need water to survive. With these benefits, they can buy their water [or] they can buy their own food and enjoy their rights like anyone else”. 

Being there for each other

Thanks to the Debrief and the podcast, I've also had wonderful conversations with fellow disabled folk who've reached out to me, who are likewise finding their way into this topic. 

They've included Wildaliz de Jesùs Arocho, a Boricua environmental consultant based in Perth who recently put together a series on disability and heat, including this poignant piece about living through heatwaves with multiple sclerosis. Wildaliz captures the embodied stress of climate tipping points as “Howling Points”, moments of “no relief and nowhere to hide”.

A beautiful recently-released anthology includes a range of offerings from chronically ill and disabled folk based in the UK. Reading Moving Mountains, I feel in community as the contributors take up editor Louise Kenward's invitation to create new narratives of their own “[r]ather than seeking a ‘nature cure’ or offering inspirational and problematic messages of conquering and overcoming”. As Louise reminds us, we as disabled and chronically ill people:

“Experience the impact of the world around us – from weather systems to rough terrain – more acutely than people who do not need to be so conscious of their bodies as they move through the landscape”.

Another fruitful connection has been Angela Frederick, a blind sociologist in Texas who is writing a book about how disabled people were affected by winter storm Uri.

I so appreciate being in relationship with each other, online and in-person, where it's okay to not have all the answers and also to know we can lean on each other for support. In Julia's conversation with Peter, she got to the heart of why we need each other particularly as disabled friends: to remind ourselves of our own worth when we ourselves doubt it most.

I'll leave you with an invitation from Tori, which I wholeheartedly endorse, about not underestimating our digital networks. In her book she writes about the Wood Wide Web, the relationships between microbes, fungi, and roots of trees, and how they send messages: 

“And I draw a parallel between that Wood Wide Web and the World Wide Web, and how you can create community and ways of belonging through digital means. [...] Lots of people that I know in the disabled community often talk about how the Internet is like a home to them [...] where some of their most loved ones kind of interact. [...] That's also natural and part of our nature as human beings, to have community, to be in community, whatever form that takes.”

Let's keep being there for each other,

Áine

Acknowledgements

Huge appreciation to Julia, Pavan, Karina, Tori, Mostafa, Nelly, Sasha and Hanna for being part of Enabling Commons, for the depth of conversation, your generosity and openness.

Thank you to Prof Sébastien Jodoin for the opportunity to host and curate this podcast season. Thanks to Wildi, Angela and so many others for being in community with me. Thank you to Louise Kenward for the labour of love bringing Moving Mountains out into the world and ensuring I had access to a copy.

Thanks to Tan Kuan Aw for the illustration.

Thanks to Peter for bringing out the best in this piece.

As always, thanks to the support from readers and organisations that makes the Debrief possible.