Responses to climate change leaving disabled people behind
In today's edition we see how a flagship climate report gets disability wrong and, in reader responses, we hear what I missed out on the crisis in Ukraine.
Now I don't know enough about disability and climate change myself, so I invited Áine Kelly-Costello to be a regular contributor to the newsletter to help understand what's at stake, and get the benefit of their wide-ranging view on disability.
Áine's campaigning on climate issues was recently featured by Greenpeace. They are, like me, perhaps too obsessed with disability news. Áine hosts conversations on Disability Crosses Borders, which includes an interview with me.
This edition, with Áine’s contribution, is made possible by contributions from readers. Your support helps this newsletter grow.
Over to Áine…
Hey Debriefers, it's my honour to contribute to this vibrant disability news space. Many thanks to Peter and readers for the opportunity.
My main focus here will be on connecting the dots between disability and the many aspects of the climate conversation. I'll throw some other topics to chew on into the mix too, including in the “in other news” section you'll find at the bottom.
Getting away from floods, and vulnerability
How does the world's most authoritative body on climate change write about disabled people? And in Australia, what happens when flooding preparation leaves disabled people behind?
A month ago, the Intergovernmental Panel on Climate Change (IPCC) released its latest report called Climate Change 2022: Impacts, Adaptation and Vulnerability.
The 3675-page document is a scientific overview on the many ways climate breakdown is upending people's lives and livelihoods already and the risks to come in future. The take-away is that there's no area of life, human or ecological, which climate change isn't going to touch. The more prepared we are, and the more action we globally commit to in order to slow down climate breakdown now, the better.
Note: this report constituted the second of three parts which together make up the Sixth Assessment Report. Today (4 April) the third part, on mitigation, is released, which I'll look at in a future edition of this newsletter.
The report is inaccessible
Before I get into the content, I have to point out that the report itself is inaccessible for most people, and especially so for people with access needs. It's over 3000 pages long, only available in PDF format, currently only available in English and full of highly scientific language.
It does come with a summary for policymakers and some frequently asked questions, but to get your head around it I recommend coverage from media outlets with a track record of reputable climate coverage. Here's a good summary from the Guardian, and a rundown from Al Jazeera.
How does the IPCC report talk about disabled people?
For perhaps the first time in an IPCC report, our community is not completely invisible though a health-focused lens dominates. Chapter 7 points out that:
“Climate change will affect human health and wellbeing in a variety of direct and indirect ways, depending on exposure to hazards and vulnerabilities that are heterogeneous and vary within societies, influenced by social, economic and geographical factors as well as individual differences.” Extreme weather, like floods and heatwaves, wreaking more havoc will “expose people to increased risks of climate-sensitive illnesses and injuries, and, in worst cases, higher mortality rates”.
The ever-increasing risk of serious mental health impacts, including of suicide, is also acknowledged. It's noted that structural inequities influence this risk too.
However, when disabled people are mentioned explicitly, we usually get relegated to an item in a list of so-called vulnerable groups. New Zealand journalist Olivia Shivas covers the scant mention of disabled people in the report, and I've yet to find another media outlet pointing that out. As I say in that piece, the narrative in the IPCC report, around climate breakdown making people sick and causing a population-level health burden with shortened life expectancy, comes across as limiting and fatalistic to me.
The problem with saying or implying disabled people, or any marginalised group for that matter, are inherently vulnerable, is that it strips the community in question of our agency. Disabled people, in fact, are well used to problem-solving and adapting in a world not designed for us.
While the report contains numerous mentions of vulnerability where its causes are not questioned, Chapter 18 does point out that adaptation efforts that don't address underlying inequities and power imbalances won't be transformative, and in fact will probably entrench or worsen those inequities. This discussion also refers to inclusive decision-making and reflects the importance of indigenous and local knowledge.
Our disabled community/communities draw from and share our own knowledge systems and expertise too. However, if the decision-makers — from international forums like the annual COP conferences down to local administrations — are failing to pay attention to us, we get abandoned in climate-fuelled crises and some of us, needlessly, die. As Julia Watts Belser puts it in a piece I keep returning to, “disabled people cannot be expected losses in the climate crisis”.
Lack of disabled-led flood preparedness has devastating consequences
Political failures to plan for climate breakdown with disabled expertise and lived experience front and centre continue to leave disabled people in extremely vulnerable positions. Look no further than the flooding that happened in Australia in February and March.
In New South Wales, disabled people went without the assistance they needed to get to safety, lost their mobility aids, and had to throw out essential medication due to power outages. A similar story was unfolding in Queensland, where disabled people described the instability and stress of getting separated from their support workers and having to rely on ad-hoc communication systems. All this is despite research having already identified similar challenges during flooding in New South Wales in 2017, research which provided practical recommendations for preventing them in future.
Regardless of these challenges being well known, accessible homes, already in perilously short supply, flooded again, and evacuation centres were often not accessible. A big part of why disabled people are so disproportionately impacted is because of underlying inequalities in social conditions. Disabled people were far more likely to be living in places likely to flood in the first place because they disproportionately live in poverty and those areas were more affordable.
Prioritising disabled expertise
I recently explored the missing conversation about disabled leadership in climate justice for an Aotearoa New Zealand context. We don't need to be expected losses in the climate crisis and can in fact thrive in a climate-friendly and accessible future. But the default position is that we get left behind, and allies have a responsibility to us in proactively including and amplifying our perspectives.
In other news
We've got this
From the blurb: “In We’ve Got This, twenty-five parents who identify as Deaf, disabled or chronically ill discuss the highs and lows of their parenting journeys and reveal that the greatest obstacles lie in other people’s attitudes.”
This new anthology edited by disabled parent Eliza Hull mainly features the voices of parents based in Australia, including aboriginal people and migrants. It is a rich read for disabled and non-disabled parents alike. Personally, as someone with multiple disabilities with a lot of question marks around parenting, I'm really appreciating reading the experiences of people with all different conditions, each with their unique journey coming into and navigating parenthood.
It's available in paperback, ebook and audio from Audible.
The Helen Keller Exorcism
Follow Deafblind speculative fiction writer and media studies professor Elsa Sjunneson on a wide-ranging, personal and bumpy exploration of Helen Keller, whose ghost has haunted Elsa all her life. It incorporates perspectives from other Deaf and disabled scholars and thinkers beautifully. Content warning for in-depth discussion of eugenics.
The story is available as a podcast episode, ASL translation and text-based transcript.
‘Where the bats hung out’: How a basement hideaway at UC Berkeley nurtured a generation of blind innovators
I absolutely love this written piece from Isa Cueto for Stat News. It's a vivid, nuanced and authentic tour of the profound and enduring legacy of blind folks discovering blind community at university.
End ableist migration rules
On a personal note, I'm part of a recently formed collective of migrants, refugees and families advocating to get rid of some very ableist migration rules in Aotearoa New Zealand. No matter where you're based, we'd love your support on Facebook and Twitter.
Get in touch
I have a privileged background as a white middle-class person, having always lived in high-income countries and being university-educated. In future editions, I'd love to use this space to lift up the voices of those who are being hit first and worst by climate breakdown and/or other inequities now. Please feel free to get in touch and to offer feedback. You can reach me at @ainekc95 on Twitter or ainekc [at] gmail [dot] com.
Thank you and till next time!
Coming back to me, Peter: hello again! Let's dive into the Disability Debrief mailbag for new perspectives that give important depth, reflection, critique, and flattery.
On the war in Ukraine
Readers bring two areas that I missed in the original piece: how war affects the community support that people with disability relied on, and a view from inside humanitarian organizations on how inclusive the response is. Your feedback also gave me insights into how to keep telling this story of disabled people in a changing world.
“War breaks these fragile nets, and there's no way to replace them”
Lucy Kadets, a family friend from Ukraine, told me about the ruptures in social life that the war has brought about and how they particularly affects persons with disabilities. “War breaks all these fragile nets, and there is no way to replace them.”
Before the war, many Ukrainians would find solutions for daily life and necessities outside of formal systems. Getting medicine, for instance, wouldn't need a prescription if you could pay for it. For many persons with disabilities, daily needs and social inclusion were realised through efforts of families, neighbours or associations rather than government services or wider social awareness.
People who have fled Ukraine now need to get their medication in Poland, Germany, or wherever, but don't have a prescription to show that they need it. While men under 60 are prohibited from leaving the country, there is an exception if you have a child with disability - but many would not have the paperwork to show that.
It was a fragile support network built on goodwill. “It depended on community and community is now broken.” Lucy lives in Israel but keeps close connections with friends and family in Ukraine. As part of volunteer efforts supporting evacuation she sees some of her loved ones remain and others of a previously close community scattered around different countries. She feels the social devastation acutely.
“Even if the war stops today and miraculously houses were not ruined anymore, the care and support system will not be there. This is very scary and fucked up, in every way.”
Is the humanitarian response inclusive?
I spoke to a colleague that could tell me what it looks like from the inside of big humanitarian organizations - sadly being on the inside means it's easier for them to share updates anonymously, as they have strict hierarchies.
“It is the most inclusive response I have seen.” My colleague tells me that response mechanisms have included persons with disabilities and that coordination systems are engaging organizations of persons with disabilities. In Ukraine, some institutions have been visited and others have been supported to evacuate. Information is being gathered about persons with disabilities and the UN efforts providing information and services to refugees have been designed with a view of accessibility in mind.
None of this contradicts the concerns raised about gaps in the response, but it does provide context and reassurance that there are people working on it from the inside of these systems.
One of the things that makes inclusion in humanitarian response so complex is that there are so many international and national organizations working together. I’ll keep us out of this alphabet soup of acronyms for today, but evaluating how much the system is succeeding at inclusion will need to get into how each organization can be inclusive in its mandate.
Is this a bureaucratic response to a situation where people have urgent needs? Yes. Are the ways that the international community responds to disaster fundamentally broken? Maybe yes. See the New Humanitarian to get deeper into that question.
Telling the disability story
I'm touched by the kind feedback to the Ukraine piece. I'm glad that I was able to combine art and poetry in the way that I wrote about Ukraine. We got some lovely comments about my friend's Tan Kuan Aw's art, so I asked him if he would be interested to do more art for the newsletter, and I'm thrilled that he agreed.
One striking thing for me is that several people have started calling what I do “journalism”! Who knew? I'd never thought of myself as a journalist in my life — “freelance bureaucrat” was my working description — but I guess this is what the newsletter is becoming.
I also got an important question about which story we tell, something I was uncomfortably aware of when I was writing. Basem Marid wrote:
“I mourn for the victims of the war between Russia and Ukraine. But I have a question: there were victims in Lebanon, Syria, Yemen, Palestine, Libya. Why did not all sadness appear in America and other Western countries?”
On other newsletters
From awareness to action
It was great to see people vibing off the interview with Yazmine Laroche and her work in the Canadian public service. Definitely a few of us are a bit envious that our own countries need that kind of momentum and leadership on disability in the public service. Reflecting on that it's interesting to see that even where Yazmine is supported by legislation, a minister's vision, a good policy to implement, she still needs a good level of hustle, charm and expertise to get people to take action on disability inclusion.
Honesty about uncomfortable things
When writing about the recent international conferences on disability, I shared a blog asking why international efforts on disability hadn't engaged disabled people in the projects implementing them. A comrade from this international work, Shikuku Obosi wrote :
“Thank you also for acknowledging Fredrick Ouko’s post on LinkedIn. I knew not many people in the disability sector would comment on it because it touches on those difficult things that some people would feel uncomfortable to talk about, but you have, and I think that is important.”
If it's a compliment feel free to go beyond honesty
As ever I do appreciate the hype. Thanks to many of you who have said nice things and those who shared the newsletter with their friends. To pick out one particularly nice tweet, thanks to Jen Bokoff for this, glad to have you as a reader.
Be in touch
As well as sharing this newsletter with others in as exaggeratedly-positive form as possible, I love people being in touch, and hope to continue to share reader comments.
If you get this on email you can just press reply; if you read this online my email is email@example.com. Find me on twitter @desibility.
Thanks to Tan Kuan Aw for the expressive artwork that helps communicate the disability story, and for the newsletter logo.
Warm thanks to Áine for joining in as a contributor. Disability Debrief already benefited from Áine's knowledge even before this edition: they regularly share great news that I then feature in the newsletters, and they gave the idea of calling the absurdly long collections of links I do “all-you-can-eat news”.
Thanks to support from readers that powers Disability Debrief and in particular supported this edition. Welcome this month to a new subscription from Ellie.
I love when people share the newsletter or get in touch - reply, leave a comment, or find me on twitter @desibility.
Until next time, which should be another all-you-can-eat news buffet,