Disability in the Heat
Why authorities need to prioritise people at highest risk as temperatures rise
Áine here. Much of the northern hemisphere is scorching in record-breaking heatwaves right now. If that's you, I know you'll be doing what you can to find advice applicable to you for staying cool, and I'm sending solidarity.
I've wanted to take a deeper look into extreme heat on the Debrief for a while, because its myriad impacts on disabled and chronically ill people are still not widely-recognised. It also challenges a lot of things many of us, especially from cooler climates, may take for granted, like the ability to go outside and get fresh air, or the ability to get a good night's sleep. Have a read and let me know what you think!
Covid-19, on the face of it, is a viral infection lasting five to ten days. Heatwaves, on the face of it, are a period of at least two or three days of unusually hot weather relative to the climate of the location. But there's nothing short-term or one-off about the collective effects of the pandemic, not least for disabled people. The impacts of climate breakdown, including drastic increases in the frequency and intensity of extreme heat, are long-term and life-shaping too.
The pandemic and extreme temperatures have a second aspect in common: the virus, and heat, are stealthy. They're not visible; only their effects are. And their effects accumulate and feed off each other over time. Each year, extremes of heat and cold cause millions to die around the world. Fortunately, cold-related mortality is heading downwards. But there's scientific proof to show that failures to curb climate breakdown, also known as global heating, mean heat-related deaths are going the wrong way: up.
In the midst of the northern hemisphere summer, heatwaves are currently wide-spread, impacting much of Europe, the US, and China. The UK's current heatwave has gained significant attention, including advice on staying cool from disabled people's perspectives on the Access All podcast, and on Twitter.
Despite their long familiarity with living with the heat, perspectives from people with disabilities in the Global South on minimising the risks of extreme temperatures are still not given prominence. I started looking into this topic a while ago, when heatwaves across South Asia in March and April brought extreme temperatures to the region unusually early - a reality made 30 times more likely due to climate breakdown.
I soon realised that asking about particular heatwaves was dodging a more pervasive reality. Yes, the heat arrived earlier, considerably reducing wheat yields, and economically impacting farmers livelihoods as well as consumers. Yes, it sent India's average maximum March temperatures the highest they've been in 122 years. But really, living in the ongoing extreme heat as a person with a disability in any location that regularly sees temperatures climbing into the 40s, especially when lacking air conditioning, is a survival skill. Unjustly, it's called upon more and more every year.
Surviving the heat's disabling effects
Smitha Sadasivan of Chennai, a city in the South Indian state of Tamil Nadu, has Multiple Sclerosis (MS) and lives without air conditioning. The Disability social worker, consultant and human rights advisor is accustomed by necessity to surviving the disabling effects of the heat.
“The fatigue is too much during the hot climate,” she tells me. “And the brain fog: I am awake but can't comprehend, can't work, feel dull, lost.” Sadasivan's vision also fluctuates and worsens during the heat, a common symptom of MS.
If being awake is unpleasant, trying to sleep is no better. And it's not just a day or two here or there; this is a common occurrence between March and August from summer into the monsoon season, every year now.
Flares and other autoimmune impacts increase too, with a higher chance of lesions and MS relapses generally, which can have long-term, potentially life-shortening consequences. The picture is similar for those with many other chronic inflammatory conditions.
For Abha Khetarpal, a polio survivor and wheelchair user, heatwaves mean being trapped inside for months. "Everything is linked," she emphasises. Khetarpal, a long-time disability and sex education trainer and advocate, lives in the Indian capital, New Delhi, and is one of only about 13% of people in India to have ready air conditioning access. Still, going out is almost impossible. Inaccessible public toilets mean that Khetarpal avoids drinking water when outside — which is not a viable tactic in extreme heat. Sadasivan, too, reiterated this; she also cannot use public toilets because they are not hygienic, and make people who are immunocompromised like her sick.
Even if the toilets were accessible, Khetarpal continues, the public water taps for drinking water are too high to be accessible for wheelchair users. Besides, power chair batteries drain faster in the heat, and a build-up of sweat and humidity when sat in the same position for some hours increases the risk of fungal and reproductive infections for women. “Women with disabilities suffer differently,” Khetarpal emphasises.
I ask Khetarpal if the impacts of climate breakdown have come up in her counselling work yet. Through her initiative Cross the Hurdles, Khetarpal has been delivering free online counselling to people with disabilities for a decade now. They have not, directly, she says, “but when going deeper into the topic such issues are there.”
Women living in rural areas have raised the impacts of water-related challenges. Approximately 600 million people in rural India face severe water shortages, with the needed groundwater supplies from wells, ponds and tanks under severe strain. It's typically women who are obliged to travel long distances to find water, and women whom the shortages also disproportionately affect considering the impacts on menstrual hygiene and lack of private toilet facilities. Many people with disabilities, of course, don't have the means to fetch water themselves, and in addition the risks increase given that many households lack access to clean, uncontaminated water. If one ingredient is pivotal to surviving heatwaves, it's a ready supply of uncontaminated water.
Both Sadasivan and Khetarpal are acutely aware of their relative privileges. The compounding effects of lack of air conditioning for those in poverty are heightened in houses with tin roofs. Buses, too, usually lack air conditioning. Many people with disabilities live rurally and their jobs are outside by default. It's not just agricultural jobs either; also things like helping a mason with construction or being a shop assistant in charge of item delivery. It's critical, Sadasivan says, that the Government take account of the increased risk and assist people with disabilities to find indoor jobs.
In the US, India and probably elsewhere, some disabled people are relocating to avoid the worst effects of the heat. But this, even if desired, is not an option for most, given the combined effects of socioeconomic status and migration restrictions. Disabled people disproportionately live in poverty and lower income is correlated with more impacts from extreme heat. Meanwhile, as increasing temperatures stymie seasonal harvests and wheat crops, this in turn contributes to the rising cost of living in a phenomenon dubbed "heatflation".
At highest risk
Theoretically, all human beings cannot survive if the temperature and humidity jointly get high enough, for long enough, to prevent the body from cooling itself down. This leads to heat cramps, heat exhaustion and heatstroke. While warnings about such deadly effects in South Asia this year were sounded, the death toll from the early heatwaves in India and Pakistan were surprisingly low, with early estimates placing it at 90 for the countries combined.
This contrasts with reports of over 2000 people having lost their lives in a recent heatwave across Spain and Portugal. A number of factors may jointly account for the low toll in Asia, experts say, including the dryness of the heat, challenges obtaining accurate data, successful adaptation measures and under-estimating what heat-induced environmental conditions are survivable.
What this more complex picture points to is the interplay of individual, social and environmental factors in determining how heat survival can be improved. In this sense, it's crucial to focus most on those at greatest risk. According to the UK's National Health service, that includes:
older people – especially those over 75
those who live on their own or in a care home
people who have a serious or long term illness – including heart or lung conditions, diabetes, kidney disease, Parkinson's disease or some mental health conditions
those who may find it hard to keep cool – babies and the very young, the bed bound, those with drug or alcohol addictions or with Alzheimer's disease
people who spend a lot of time outside or in hot places – those who live in a top floor flat, the homeless or those whose jobs are outside
Understanding how particular disabilities, health conditions and mobility needs interact with the heat can help with managing them. A symptom of Parkinson's disease is a lack of thirst, and thus putting a system in place to avoid dehydration becomes critical. People on antipsychotic medications, such as many people with schizophrenia, are at acute risk due to temperature dysregulation caused by the medications. The high temperatures take a considerable toll on mental health especially for people already experiencing any sort of mental distress.
Heat affects the whole body, placing strain on organs including the heart, brain, lungs, kidneys and more. Chronic pain worsens and autoimmune conditions tend to flare up. Service animal handlers have to account for the wellbeing of their furry companions in the heat, learning to recognise signs of heat exhaustion and by trying to avoid working them in the hottest daytime hours. Organisations of persons with disabilities, Sadasivan says, are well-placed to play a role in raising awareness among their members, ensuring they understand how their particular disability or health condition responds to heat.
In 2018, during a heatwave in the Canadian city of Montreal, people with schizophrenia made up a quarter of all heat-related deaths but only 0.6% of Montreal's population. They were around 42 times more likely than average to die. Two thirds of those who died in that heatwave were over 65 while nearly three in four (72%) had a chronic condition. As Khetarpal highlights, it's vital that inclusive and accessible healthcare management includes clear messaging from authorities on how people with disabilities and health conditions can prepare for heatwaves and where to seek help when needed. That also requires resourcing first responders and the healthcare workforce for the increase in ER visits which heatwaves lead to.
The risks of extreme heat go beyond the direct effects of temperature on the body. Without access to cooling, food has to be thrown out, increasing food insecurity and impacting livelihoods. Whenever increased temperatures cause increased demand for air conditioning, electricity companies are more likely to switch off the power to groups of customers, to prevent the electricity system from collapsing.
In May, a survey by citizen social media initiative LocalCircles reported that three in five Indian homes lost power, and that over half of those don't usually get warning from their power provider when this occurs. Loss of power knocks out fans and air conditioning, and disproportionately impacts those who always rely upon electricity to stay alive, whether to power oxygen generators, powerchairs or provide necessary refrigeration for medications.
Resistance and resilience
A recent episode of excellent climate justice podcast Hot Take featured a conversation about what resilience means. Is it communities being able to determine for themselves how they will, collectively, find a way to survive and move forward within increasingly unforgiving climate odds? Is it a racist term that gets applied to communities of colour as a convenient excuse for those with more power and wealth to opt out of doing something about assisting those facing disproportionately terrible odds? Is it both?
We could be asking similar questions for disabled, older and chronically ill people. How can we ensure resilience is not used as an excuse to place too much individual responsibility on those of us at highest risk in climate-fuelled extreme weather to be fending for ourselves?
Local and community resilience undoubtedly makes a difference. But communities also need leverage to build that resilience, not least when considering that multiple climate-fuelled emergencies and the pandemic are impacting us on multiple fronts simultaneously.
In the piece linked earlier, laying out a number of explanations for why this year's South Asia heatwave death toll was much less lethal than feared, a Mumbai-born climate policy expert Tim Sahay is blunt about the harm caused by fatalistic apocalypse narratives which centre on India, such as that of the opening extremely deadly heatwave scene in Kim Stanley Robinson’s novel The Ministry for the Future. “We’re not going to die for your narrative,” Sahay says in the article. The sentiment echoes one from disabled rabbi Julia Watts Belser, who makes the case for fighting back against narratives preemptively writing off some people, especially disabled people, as expected losses in the climate crisis
Accounting for the specifics of the local climate, economic context and situation of disabled people will be critical in designing appropriate measures to prioritise our survival and wellbeing in extreme heat. As climate resilience and disability rights advocate Alex Ghenis lays out, these at a minimum will involve logistical support towards physical and financial access to cooling, contingencies for power outages, and tailored, accessible outreach to warn about extreme heat and the steps people with disabilities and health conditions can take themselves to minimise the risks.
In India, there are policy frameworks designed to plan for and respond to heat in ways that provide early warning, limit exposure and save lives. The country has a 20-year India Cooling Action Plan. Heatwave advisory systems are set up at many district and city levels. Outdoor working times are adjusted and more water in public places is provided.
In addition, many cities and states are taking learnings from the city of Ahmedabad, Gujarat, where a scorching 2010 heatwave resulted in 4462 deaths among other tragic impacts. Ahmedabad's resulting heat action plan, the first in South Asia, emphasises communication between key departments responsible for disaster management, health, water, transport, schools and so forth. Community outreach, interventions like ice pack and water provision, and targeted heat alerts are meant to better protect vulnerable groups. But the plan doesn't explicitly mention people with disabilities, nor, for example, accessibility provisions like ensuring information is distributed in accessible formats.
Abhishek Kumar is a lawyer with low vision who has spent the past five years documenting climate impacts on Indian communities at greatest risk including people with disabilities. Kumar says that, despite the proliferation of policy instruments, a lack of real-time data and records on persons with disabilities is a key roadblock to disability-specific disaster planning and response for the country. This is despite the 2016 Disability Rights Act mandating that district disaster management authorities maintain records of persons with disabilities. In the 2011 Indian census just over 2% or about one in 45 people are recorded as having disabilities, markedly lower than international estimates of 15% globally, and there are numerous inconsistencies and complexities involved in relying on existing disability certification and ID mechanisms.
In India and low income countries, the heat is intimately linked to inequities involving the basic necessities of survival. Measures like adequate clean water, nutrition and sanitation access, back-up power supplies, and more rural indoor employment availability are urgent. As Sadasivan suggests, subsidised access to cooling and provision of cooler roof tiling could be considered as a form of social protection, on a similar track to the provision of assistive devices.
Wealthy countries, meanwhile, should provide significantly amped up climate financing pledges, and technological support, to help countries like India provide cooling to all — in a way which isn't itself fuelling climate change by prioritising efficient AC systems which don't rely on any heat-trapping gases. Globally, a report by international organisation Sustainable Energy for All has found that 1.2 billion (yes, billion) people are at risk from lack of access to cooling — and that this number is set to rise thanks to climate breakdown.
But as experts explain, air conditioning cannot be the only solution. Cities like Medellin, Colombia are redesigning urban environments to harness tree canopies to aid cooling. Medellin has developed an interconnected network of 30 “green corridors” which are planted with vegetation to provide 20 km of shaded walkways and bike lanes. The urban heat island effect, which causes concrete heavy, tree-poor urban areas to heat up more than their surroundings, is reduced by 2°C (3.6F) thanks to the corridors. Levels of air pollution, which pose substantial health risks of their own, decrease as well. As always, it's important such initiatives build in accessibility planning from the beginning, capture the preferences of local disabled people, and are equally available to low income folks.
Tackling long-term inequities
Increasingly, there's no escaping the heat, no matter where one lives. I, for instance, happen to be living in northern Norway, above the Arctic circle, and as a chronically ill person, the effects of warming are very noticeable even here. That's thanks in part to the excellent insulation on the houses here which are built for withstanding -10-degree winters, not 30-degree summer days.
Sitting in my bedroom as I write, with a newly-installed heat pump providing me ready access to cooling, I am reckoning with the knowledge that it's my place-based, housing and economic privilege doing much of the heavy lifting of keeping me both alive and with enough energy and clarity of thought to write this newsletter. I'm one of millions of people with long Covid, and lots of us have resultantly developed autonomic symptoms including the inability to adequately regulate our body temperature or sweat properly. It's just one more way the long-term inequities of the pandemic and climate breakdown overlap.
I hand it back to Kumar for the final word. “The best way to protect people from climate change,” he says, “is by tackling inequities such as those based on gender, ethnicity, disability, age, location and income. We need to fight the Inter-generational Colonisation and need to merely act as a Trustee of the natural resources and planet for the future generations and not act like owners exploiting unsustainably.”