I'd fight like hell for you

Dear Debriefers,

One of the challenges I've had thinking about the climate crisis and how it will affect disabled people is its seeming inevitability. It's hard to imagine anything other than challenges compounded into catastrophe.

To understand these questions more deeply, I spoke with Julia Watts Belser, a disabled academic and rabbi. Julia has created an archive documenting the voices of disabled people in climate disruption. And her most recent book, Loving Our Own Bones, explores the “spiritual subversiveness of knowing ourselves whole”.

Julia argues that to tackle the climate crisis we need to push back against discrimination and marginalization more widely. We speak about what this means politically and, in some of our deep fears, personally.

It's a conversation that remakes how we understand the world and our relations in it. Julia shows us how a commitment to not giving up on each other gives us a way to make climate disruption more liveable.

Disability Debrief is supported on a pay-as-you can basis. This edition has support from CBM Global. And with thanks to Julie for a new contribution.

Vulnerability is a dangerous business

Peter: In your writing on “expected losses” you push back against conceptions of disasters and the popular imagination of who will automatically be lost. You break it down by showing social barriers and how inequalities are socially produced.

Julia: Climate change and its effects strike harder against disabled folks. It's materially true that we are disproportionately affected by climate change, whether we're talking about natural disaster, heat crisis, or  catastrophic storms.

But vulnerability is a really dangerous business. It's easy to read vulnerability as inherent to disability: “So sad that you're a wheelchair user, that makes you more vulnerable.” I want to flip that script and focus on the social and political structures of marginalization that end up creating and intensifying vulnerability. Because that's a very different story.

My working assumption is body minds are what they are. Disability is in the world. And I want a world where disabled people can continue to survive and thrive.

Making the problem bigger

Peter: But socially-produced exclusion can also be seen as inevitable. Whether I’ll be in trouble because I can't walk, or because society is built not to support people that can't walk. I’m still going to be in trouble. How do you interrupt that second layer?

Julia: If we're only looking at the crisis event, we miss how unequal infrastructure and resource allocation have already set up different outcomes for different people. My thinking on this question has been shaped by the work of disaster theorist Rob Nixon, who says, “Discrimination precedes disaster.”

It's tricky. When I talk about this with folks who are working on climate questions, they're like, “Don't make the problem bigger.” But if we want to address the root causes of disabled people's risk during climate emergencies, we have to make the problem bigger. We have to look at the chronic crisis that so many disabled people already live in.

In a US context, for example, our government puts a  strong emphasis on encouraging  individuals to be prepared for disasters. In the Disability and Climate Change Archive, I have a conversation with disabled activist Maria Palacios that really highlights this.

She talks about being at emergency preparedness trainings, where some guy in a three-piece suit is saying, “Make sure you have extra food stored away.”  But if you’re already in a state of food insecurity, that’s just outrageous. I mean, who can do that? The idea that people who’re already hungry have emergency food squirrelled away in the event of a hurricane, it doesn't make any sense.

How do we plan for a world in which disabled folks are expected to survive disasters? How do we make sure that disabled people get the resources we need to rebuild, reimagine, and reconstitute our lives and communities and networks post-disaster? That's a different question.

Peter: Good question.

Julia: Virtually everything I want on this seems very difficult to obtain. We are living in a world that is so, so far from that. So many disabled folks are forced into positions of scarcity and precariousness. And if we're really committed to disabled people navigating climate crisis, that's got to change.

The answer is a massive shift in resource allocation. A dramatic rethinking of social services, community networks, support, employment. It’s so big. But I think it really matters to name that, from a policy perspective and also from a climate organising perspective.

To really do work around mitigating climate harm means involving a lot more people and agencies and organisations. There’s a lot of room for collaboration and working together. There's a lot of ways people who don't classically understand their work as climate work can contribute.

A masterclass in adaptation

Julia: But I also think it’s essential that we center disabled people’s knowledge.  Disabled folks often have cultural wisdom and pragmatic insights about the kind of changes we need to make in the world at large, and I think that can be a powerful resource for climate movements.

Disability is a masterclass in adaptation, in figuring out how to navigate a world that is not built for us. As climate change makes the world less predictable and more hostile, that kind of wisdom is something all of us are going to need.

Disabled folks have hard-won knowledge about how to do that, about how to navigate tricky environments, about how to respond to circumstances and adapt to limits.   We’ve learned how to approach problems creatively. “Well, I can't do it that way. I'm going to have to do it this way.” That's a disability skill set that matters.

Peter: What’s an example of bridging the political and pragmatic parts of what you’re saying?

Julia:  I think disaster planning would look very different, if we actually centered disabled people’s experiences.  We’d think a lot more realistically about what most people actually need in order to navigate crisis.

In the US context, for example, disaster planning often assumes that people will evacuate before a storm—and that they’ll rely upon private transportation in personal cars. It's that idea, just take your essentials and drive yourself out of town. It’s such an individual model, such a resource-intense, money-intense, capacity-intense model. For most disabled people it doesn’t work. And for most people living in poverty, it doesn't work. 

I'd fight like hell for you

Peter: For me, part of this is imagining what would happen in whatever situation. It's very personal: my imagination of risk is different from that normative imagination of risk. Part of me assumes in a disaster, I wait until the end and see if there's someone to help me out. When you talk about expected losses, that is also a belief within me.

Julia: Yeah, this resonates with me so intensely. And it's been a part of so many conversations that I've had with other disabled folks. That nightmare situation where our specific disability becomes an acute limitation in a moment of crisis.

Peter: We tailor-make a fantasy for what we can't do.

Julia: For me, as a wheelchair user, it's always a situation where I have to run. And then secondly, it’s that crushing sense of being a burden. Of being too hard and too much trouble to save. What you said about I'll wait to the end and see if someone has time to come for me.

Peter: I’m going to use my charm. I'm going to see if I can talk my way out of this situation like I talked my way out of the others.

Julia: Absolutely, I'm going to negotiate as much as I can. Everyone develops different strategies. I think you and I both have that word-based, charisma-based strategy.

But that makes me think about another conversation that’s part of the Disability and Climate Change Archive, a conversation with Justice Shorter. She talks about how many disabled people have learned  to use whatever kinds of strategies we can as a kind of protection against ableism and abandonment, “Oh, I’ll build relationships, I’ll be nice to people,” in the hopes that folks will remember to come back for us when the building goes up in smoke or whatever.

And she said, “You shouldn't have to be nice to be worth saving.” It just hit me so hard. We’ve internalized this sense of having to contribute in some way to balance out this perception that we're too much or not enough. So yeah, it's really quite deep work here.

Part of what's been powerful for me is watching disabled folks say to other disabled friends, “I'd fight like hell for you.” Even when we're not entirely sure that we would say it for ourselves.

I'm thinking about the people with whom I make disability community who have responded, when I’ve been struck to the heart by ableism. When I’ve been laid low by my own sense of things being too hard or that fear that I’m a burden, it’s other disabled people who have reflected back to me a sense of my own worth.

That work of reflecting back to each other, this quite revolutionary counter-cultural commitment that our lives matter, that I think is actually a bedrock of the work that I see myself doing with the Disability and Climate Change Archive. It’s a collection of testimony from folks who are saying, “Actually, the world must not leave us for dead.”

Peter: Must not, based on?

Julia: I think this is actually a moral, ethical claim. For me, it’s a spiritual commitment. It’s a bedrock commitment that your life matters, and mine too.

Peter: That’s the thing that's hard to believe sometimes.

Julia: Ableism gets under our skin.  You know, I write about this in my most recent book, Loving Our Own Bones.  In many ways, that book is a love letter to disability community, written out of a fierce desire for us to know and claim our own bodies and minds as worthy of love.  But the practice is so difficult-- and not just because of some lack within ourselves. Because the whole world is set up to  double down on the idea that we’re a burden, that we’re not good enough. It’s not just that we inherited these crappy notions. There’s so many ways in which that message gets broadcast and reinforced.

Peter: It’s a difficult one for humans in general. But then on top of that…

Julia: When you add social and political marginalization on top of that, it really amps it up.

Disaster communitas

Peter: Another part of the picture is the social imaginary of disaster, which is often that everyone will fend for themselves. But writers like Rebecca Solnit have pointed out this imagination is wrong, and that practically there are always helpers there.

Julia: Scholars who work on disaster describe this phenomenon as disaster communitas. In the immediate aftermath of a crisis, we often see a huge spike in care and connection, in giving, in volunteerism, an outpouring of desire to help. The way people show up for each other after a disaster is often extraordinary.

Now, of course, that can show up in not always the best ways. Disability communities know quite well the way that people's desire to help can be a mixed bag. You’ve got to channel that impulse in effective and responsible ways.

And the immediate rush of aid can also miss an important dimension: the way the aftermath of disaster looks different for disabled folks. Disabled people aren’t just hit hardest by the immediate impact of disaster, we’re  also disproportionately affected by disaster's aftermath. High numbers of disabled people get institutionalized after disaster. A lot of people get displaced, and it can be very difficult to get home. Access falls apart. You lose your tech…

Peter: You stop doing your treatment for a while.

Julia: Exactly, exactly. That complicates your disability, so recovering from disaster takes a lot longer. But the outpouring of public support after an immediate emergency usually dries up really quickly. 

I'm really interested in ways to draw it out. How do you offer ways for folks to tap into that desire to help in a longer term, more sustainable, more integrated, deeper way? Ways that help support and empower folks who are most directly affected, who are most marginalized.

I'm also quite interested in thinking about how disability care networks, the kind of care networks that disabled folks build amongst ourselves, offer a flexible, fluid model for thinking about what disability responsive support and resilience might look like.

Not giving up

Peter: One thing that’s been a barrier for me in understanding the present moment is that it’s just overwhelming to conceive. How do you look at the future and the possible futures and still function?

Julia: This is such a deep and important question. People often ask me, “Do I have hope?” It's the perennial climate question. I do have hope, but I think we really have to unpack what that means.

I work from the premise that climate change is already here. Climate crisis is already affecting people--some of us much more than others and some parts of the world much more than others. So if people say, “Oh, do you have hope?” In the sense of, “Can we stop the storm?,” I think that ship has sailed. We're going to experience climate harms.

But there are many things that we can do to mitigate the impact. It's crucial that all of us, especially those of us in wealthier, more privileged countries push politically for more meaningful climate commitments. But I think we also can and must work in small-scale ways, to support each other during hard times.  Building those connections now is one of the most meaningful ways I think disabled people prepare for crisis.  I draw a strong sense of hope from the ways I see disabled people building friendships and networks of support and care. It’s a tangible commitment to navigating as best we can. And to fighting hard for each other.

That’s one of the things that’s been so meaningful for me, as I work to build the disability and climate archive. People sometimes say, “Oh, that project must be so depressing. It must be so hard.” But it’s actually work that feels very life-giving. Because we’re working to chronicle disabled people’s commitment to not give up.

We’re going to have to navigate climate disruption.  So the question becomes how do we work to make it as livable as possible? As just as possible? What are the ways we can offer each other more shelter, more care?

Peter: Thank you Julia. On many levels your work gives ways to remake and re-see the world.

Julia: Thank you so much for this powerful and beautiful conversation, Peter. I really appreciate it, and I look forward to connecting with readers who’re also working on climate questions in their own communities. Let’s see where we unfold.

Acknowledgements

Many thanks to Julia for generosity in wise and heart-felt conversation. And to Tan Kuan Aw for his portrait.

Áine Kelly-Costello helped to prepare the interview and its thanks to Áine's work that I came across Julia's thinking on these subjects.

Our work on the climate crisis has generous support from readers and CBM Global.