Advocating at the intersection of disability & climate change
By Glen Hoos
We are delighted to include this guest authored piece by Glen Hoos, which is reproduced from the Down Syndrome Resource Foundation website and issue 19 of Canada’s Down Syndrome Magazine.
As an avid weather watcher, I saw the 2021 British Columbia (BC) Heat Dome coming.
Not in the macro sense, mind you. The extreme nature of this event, which saw temperatures approaching 50°C in Lytton, BC – annihilating Canada’s all-time temperature record – shocked even the most seasoned climate analysts. It wasn’t supposed to be able to happen; at least, not this soon. And yet it did.
Nonetheless, a week before it hit, forecasts were calling for temperatures pushing into the mid-40’s in the Lower Mainland, and there was one thing I knew for certain: my family would not be able to hack it.
Leaving aside my own distaste for heat and humidity, there was the matter of my daughter Becca. 16-years-old at the time, Becca has both Down syndrome and autism – and adamant requirements for her personal environment.
Becca hates fans, and she hates opening her window at night-time, no matter how hot her room gets. Not that cracking a window would be of too much use with overnight lows around 30°C, but for Becca it wouldn’t even be an option.
She also hates drinking water. She simply won’t do it.
People with Down syndrome are more vulnerable than most to heat exhaustion and heat stroke. What’s more, this particular person with Down syndrome has a high propensity for keeping her family up all night long when she can’t sleep, which, in a home lacking air conditioning, was virtually assured.
So we fled.
Five days before it struck, I booked a room at the hotel up the road for what were expected to be the three hottest nights of the heatwave. Just as thermometers began nudging 40°C, we ensconced ourselves in our blessedly cool room, curtains drawn and air conditioning blasting. We planned not to emerge for 72 hours.
The next morning, however, I needed something from my car, so I took the elevator down to the lobby. I could hardly comprehend what I saw there. At a time of day when people typically check out of a hotel, it seemed the entire town was trying to check in. The lobby was jam packed with masked families (this being the height of COVID times), and they all had the same horror story of a miserable night in a stifling home. The hotel was not able to accommodate them all.
As I passed through the crowd and then the doors that led to the parking lot, the heat hit me like a wall. Just walking through it was physically oppressive, as if the air itself had obtained weight. It was 10 am, and 43°C.
The hotel room did its job. We hunkered down for three days – not happy, exactly; our family finds travel challenging at the best of times. But at least we were safe and cool.
I’m a climate hobbyist. I’ve got no scientific credentials. However, over the past five years I’ve read everything I can get my hands on concerning the state of the planet, and I know enough to be alarmed.
When I share my concerns with my longsuffering wife, she sighs and says, “Don’t we have enough problems already?” She’s not wrong. Along with Becca, we also have a teenage son who has multiple developmental disabilities, and my wife herself is in poor health. We’re not short on challenges; it’s hard enough just to get through today.
As most who are reading this can likely attest, life with disability is a life of endless advocacy. We advocate for services. We advocate for income support. We advocate for inclusion. We advocate for respect. It’s exhausting, and the last thing we need is another cause to fight for.
Nevertheless, I now also choose to advocate for the needs and rights of people with Down syndrome and other disabilities amidst the defining collective challenge of our generation: the climate crisis. It’s a problem that none of us can afford to ignore – especially those of us with disabilities or disabled loved ones.
The crossovers between disability justice and climate justice are abundant. “Disabled people are at the frontlines of the climate crisis and often have unique barriers to responding when wildfires, flooding, heat domes and other emergency climate events happen,” write Rowan Burdge, Jen Kostuchuk, and Ismail Askin in a recent op-Ed for The Tyee. “Research has shown that in emergency contexts, disabled people are significantly more likely to suffer morbidity and mortality.”
People with disabilities face greater risk from the weather-based emergencies that are becoming increasingly common across Canada and around the world. Such events have physical, social, economic, and emotional components which are magnified for those with disabilities like Down syndrome. According to a 2023 report by Vancouver Coastal Health, “climate change exacerbates existing health inequities” – including those experienced by people with long-term and permanent disabilities. And as my experience with Becca indicates, measures that are commonly advised in such situations may not be feasible for these individuals, for a variety of reasons.
Beyond the impact of extreme weather emergencies, in the coming years, our society will be transformed through a combination of climate mitigation and adaptation efforts. The energy transition is underway, and it will impact every part of our lives – changing how we live and move and eat. It is essential that the needs of people with disabilities be centred through these shifts, to ensure that such changes benefit all members of the community, beginning with the most vulnerable.
In 2023, the BC Climate Emergency Campaign issued a briefing and policy backgrounder with comprehensive recommendations for A Just Transition in BC. The aim of these proposals is to ensure that no one is left behind in the transition to a sustainable, clean, secure, and fair economy – in particular, Indigenous communities, resource-dependent communities and fossil fuel workers, and vulnerable groups such as people with disabilities.
As it turns out, there is significant overlap between the needs of the Down syndrome/disability community, and the urgently needed climate solutions that will contribute to a better world for all. Below are a number of climate advocacy opportunities that should be of particular interest to people with Down syndrome and their families.
1. Inclusive Emergency Planning
Historically, emergency planning has focused on what works for the majority of people, without regard for the unique needs of those with disabilities and exceptional circumstances. Families like mine may need extra time to prepare, making early warning systems critical. These systems must be accessible for those with intellectual disabilities and hearing or vision impairment. Provision needs to be made for those without access to personal vehicles, which are often central to evacuation plans. Public shelters and emergency facilities must also be fully accessible.
Special attention should be given to those who live in supported housing situations such as home shares and staffed residences. Those who are entrusted with caring for people with Down syndrome and other disabilities must be equipped with emergency plans and supplies in case they find themselves supporting someone through a weather-based emergency.
2. The Right to Cooling
During the heat dome of June 2021, 619 people died in BC. The majority of those who lost their lives were elderly people, disabled people, and low-income people, most of whom were in homes without adequate cooling systems such as air conditioners or fans.
Now more than ever, access to cooling is a human right. With the heightened susceptibility of people with Down syndrome to heat-related illness, it is essential to ensure that the homes of our loved ones are equipped with cooling devices.
Fortunately, there is a wonderful piece of technology that meets this need while also reducing the carbon emissions that cause climate change: the heat pump. Contrary to its name, heat pumps do double duty, both heating and cooling homes with incredible efficiency and a fraction of the environmental impact. Government rebates are available for retrofitting homes, which is a great option for individual households. On a wider scale, we need to advocate for government-sponsored heat pump installation in all homes for those with disabilities and other low-income folks.
3. Improved Public Transit
Many people with Down syndrome rely heavily on public transit to navigate their communities, and would benefit greatly from a better, more robust public transportation system. At the same time, public transit is a critical component of climate mitigation efforts. Sustainability requires not just a shift from gas-powered to electric vehicles, but also a transition towards vastly more efficient community transportation systems. Investing in the expansion and greening of public transit is a win for both the disability community and the climate.
4. Green Jobs for All
The green energy transition will be a massive job creator, generating good jobs in clean energy and ecological restoration. In BC (as well as nationally), there is a movement for the creation of a Youth Climate Corps that would offer two years of guaranteed employment and training to young adults to work on climate mitigation and adaptation projects in their communities. Many of these jobs could be appropriate for people with Down syndrome, providing an opportunity for them to contribute meaningfully to their communities while gaining valuable work experience. We should be advocating for inclusive hiring practices that allow every person to lend their skills to the cause.
5. Income Support
Canada is knee-deep in a cost-of-living crisis that is disproportionately impacting people with disabilities. Current rates of disability assistance are well below the poverty line in all provinces. The unfolding climate emergency will bring additional financial pressures to individuals and households; it is expected to be a leading driver of inflation in the coming years.
The Down syndrome community has been active in advocating for the Canada Disability Benefit. We need to continue to insist that the federal government swiftly implement an adequate CDB, while also advocating for improved supports at the provincial level.
Social justice is inherently intersectional, and there is much work to be done at the intersection of disability and climate. By centering the needs of those with Down syndrome and other disabilities, listening to their perspectives, utilizing their unique skills, and learning from their resilience, we can build a better world for all of us.
Glen Hoos is the Director of Communications and Sustainability for the Down Syndrome Resource Foundation and a member of the BC Climate Emergency Campaign. Interested in joining with others who are advocating for disability justice within the climate crisis? Please reach out to Glen at glen@dsrf.org.