Planetary Dysregulation & Disabled Communities
June 2022
by Ellis Roberts-Wright, Elahi Hossain, and Araceli Camargo
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Description
Disabled people are a unique kind of marginalised group. Not only are 20% of the population currently disabled, but the majority of currently non-disabled people will become disabled at some point: either through old age, illness or accident. Disability is also a tricky one to define. The Equality Act 2010 defines disability as “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities” (source) while those within the community have repeatedly called attention to the fact that disability is largely a social class defined by an inability to produce sufficiently under capitalism.
“Disability” is a very broad term, encompassing physical, mental, and cognitive impairments (impairments meaning deviations from what the majority experiences, and thus what our world has been built around). The sheer number of ways people can be disabled can present a challenge when trying to discuss “disability issues” as a whole, but at its core, most proponents of disability justice would describe our central shared goal as being one of access: all seeking to create a world where everyone’s needs get met, with recognition that we all have the same needs but different people will require different - sometimes more complex - ways to get those needs met.
There are many disabled communities that distinguish between the world being disabling and a person being disabled. A wheelchair user because enabled or disabled depending on the quality of a road or transport system or quality of a home. Our cities actively disable with its broken sidewalks, polluted air, and inaccessible public transport systems.
"There are no “special needs”; we all need sustenance, water, shelter and community, but some people will require things that the majority do not to ensure those needs get met.
Relationship with Nature
Alongside the greater risks disabled people experience from planetary dysregulation, disabled people are also more likely to be denied access to Nature. Footpaths and green spaces are often highly physically inaccessible, with stiles, uneven terrain and gates all posing difficulties for those with mobility impairments, especially wheelchair users. Additionally, disabled people are less likely to feel safe in public spaces than non-disabled people (source), and are more likely to be subject to everything from frequent stares to violent crime (source).
This lack of safety, and exhaustion arising from hyper-visibility, can make disabled people less inclined to go out, making it even harder for them to experience connectedness with Nature. Disabled people may also have complicated relationships with the idea of “Nature” as many of the things we may be dependent on for quality of life and/or survival are often labelled as “unnatural”, such as medicines and breathing equipment. Disabled people are often acutely aware of the fact that scientific and technological advancement has played a key part in our survival, and that in a “survival of the fittest” model, we would likely be left behind to die, which can alienate us from movements and discussions that dismiss scientific and technological advancement as artefacts of capitalism and drivers of the planetary crisis. Despite this, disabled people are also more likely to be invested in ideas of interdependence, community care and collaboration, and may well be able to point to the ways we can begin to address our current planetary crisis through these means.
Disabled people know what it is to be labelled tragic and not worth saving, and we know how to keep on living in the face of this; a vital knowledge when it comes to daring to dream that our world could have a future that looks very different to our current dysregulated reality. Disabled people also know that Nature works in strange and beautiful ways, that for every kind of “brokenness” there is a path to healing (and that this is not the same thing as a cure, requiring far more ongoing work and care).
Through recognising our shared needs and differing knowledges, experiences and ways of meeting our needs, we can begin to glimpse a way of existing that is predicated on communality, a sharing of resources and a celebration of different ways of doing things.
Disability & Environmental Injustice
The extra steps disabled people may require to get our needs met often result in us being forced to the margins of society and excluded from the discussions we most need to be a part of. A prime example of this is the discussion around planetary dysregulation: disabled people are both at greater risk from the effects of it, and have perspectives and ideas that could prove invaluable when considering how to tackle it, but our voices go largely unheard. Not only is this true, but the larger environmental justice movement can be alienating to disabled people, as it all too often focuses on disability as a damning consequence of environmental injustice, painting disabled lives as tragic and preventable, and failing to engage meaningfully with disabled people themselves. Catherine Jampel, fellow of the American Council Learned Societies (ACLS) spoke about this issue, saying "focus has generally been more on how environmental injustices cause disability, but much less on the specific vulnerabilities of disabled people to environmental injustices." (source)
A commonly used refrain in the disabled community is the phrase “nothing about us without us”, which speaks to the long history of disabled people being denied autonomy and a chance to be treated as a valued expert on our own life experiences, and addressing this is paramount if the environmental justice movement is to succeed.
Disability justice is inextricably linked to environmental justice, and we cannot truly have either one without the other. Disabled people were some of the first to sound the alarm about the damage that seemingly mundane products like makeup, fragrances and detergents can do to a body - with already-chronically ill people being more likely to develop Multiple Chemical Sensitivities (MCS). The chemicals in these products also pollute our ecosystems when they poured down domestic drains.
Disabled people have also repeatedly called attention to the escalating harms of capitalism and its links with planetary dysregulation, as well as highlighting the prevalence of eugenicist ideas and how they influence who society is willing to overlook, and who is likely to be the first to be left behind in times of crisis, such as severe weather events. As well as having a valuable perspective on the dangers of planetary dysregulation, disabled people should also be looked to for ideas about how we can tackle this crisis.
As Leah Lakshmi Piepzna-Samarasinha drives home repeatedly in their book, “Care Work: Dreaming Disability Justice”, disabled people are dreamers: our inability to perform under capitalism leaves us free to dream of something different, our constant neglect by society pushes us to dream up solutions and ways of being that work better for us. We are well practised at the skill of dreaming, and that is an invaluable talent to have when it comes to addressing planetary dysregulation, because to tackle this we are going to have to dream bigger and more ambitiously and more lovingly than ever before.
“For years awaiting this apocalypse, I have worried that as sick and disabled people, we will be the ones abandoned when our cities flood. But I am dreaming the biggest disabled dream of my life—dreaming not just of a revolutionary movement in which we are not abandoned but of a movement in which we lead the way. With all of our crazy, adaptive-deviced, loving kinship and commitment to each other, we will leave no one behind as we roll, limp, stim, sign, and move in a million ways towards co-creating the decolonial living future. I am dreaming like my life depends on it. Because it does. ”
Experiencing an Extreme Weather Event
When it comes to the impacts of planetary dysregulation, all too often disabled people are left to deal with the worst of it alone. Disabled activists are speaking out about the frequent exclusion of disabled people from emergency/evacuation plans, which fail to account for the existence of disabled people who are unable to leave their home independently, or who rely on various kinds of life-preserving equipment that is not easily transported or is threatened by power outages.
Power outages that pose little risk to most people beyond the food in their freezer being lost can be deadly to disabled people who use electricity-dependent durable medical equipment (DME) - such as ventilators and oxygen concentrators - to stay alive, with a reported 2.7 million people across the US relying on this kind of equipment (source). After Hurricane Maria killed 4,500 people in Puerto Rico, a Harvard study found that almost 10% of these deaths were associated with "respiratory problems secondary to power outages," - likely a euphemism for those relying on electricity-dependent DME. Evacuation procedures and sites are often physically inaccessible, and disabled people are all too familiar with the only plan offered being “wait and hope an unnamed person gets to you in time.”
Mobility impaired disabled people and those relying on electrical medical equipment are not the only ones at greater risk. People who experience blindness or deafness are likely to encounter communication barriers with emergency responders, while some people diagnosed with Autism may find it difficult to act in times of high stress and evacuation sites can be incredibly sensorily overwhelming, compounding this distress.
These are just a handful of examples of the immediate risks of extreme weather events, and the list only grows when you look at the knock-on impacts these events can have, such as disruptions to production and delivery lines making essential medicines harder - or impossible - to acquire in the aftermath of disasters.
There is no plan for disabled communities
Despite the significant dangers these weather events can pose to disabled people, a global UN study of disabled people found 85.57% stated that they have not participated in community disaster management and risk reduction processes. 72.20% of respondents say that they do not have a personal preparedness plan in the event of a disaster. Of the 29.29% of disabled people who do have a personal disaster preparedness plan, the most important stated element of that plan is support from family, highlighting the failures of state planning. (source)
Vulnerability Pathways
Aside from acute weather events, disabled people also suffer from the ways the planetary crisis intersects with risk factors arising from ableist discrimination and marginalisation.
Disabled people are often unemployed - either from lack of accessible job choices, employment discrimination and/or chronic illnesses that leave them too unwell to work. Those who are employed often work poorly paid jobs in poor conditions due to lack of other employment options, with disabled people in the UK earning 13.8% less on average than non-disabled workers (source) and it being legal in the US to pay disabled adults sub-minimum wage. Poor pay for those who do work and measly government benefits for those who can’t mean disabled people often have no choice but to live in substandard housing (both in building quality and location) that heightens their exposure to extreme weather and pollutants; for example, disabled people are significantly more likely to live near hazardous waste storage and disposal sites (source). These areas are also less likely to come with green spaces (and even less likely: accessible green spaces) that can offer vital shaded outdoor time to cope with heat, and connect to Nature.
As well as risks in employment and housing, disabled people also face struggles in access to adequate transport. Disabled people are less likely to drive, with 55% of disabled people aged 17-64 holding a full driving licence, compared to 83% of non-disabled people (source), but public transport is also frequently inaccessible, with one in four disabled people saying negative attitudes from other passengers prevent them from using public transport, and 40% often experiencing difficulties when travelling by train in the UK (source.) These difficulties with transport can lead to further exposure to extreme weather as disabled people are forced to walk/wheel greater distances, and inability to drive can leave disabled people stranded during weather events when public transport stops running.
Health Risks
There are direct and systemic health consequences that can stem from planetary dysregulation.
The most direct risk is experiencing an extreme weather event without assistance, proper shelter, or evacuation plan. This can result in injuries, panic, and can lead to PTSD after the event.
If a person requires specialised life sustaining medicines, these can be delayed due to services being down or transport to services being disrupted. This can have various short and long term health consequences.
Blackouts for those who require electricity for daily life sustenance, such as a ventilator, can put people at risk of heart failure and or death.
Evacuation after an event can also be very dangerous as there can be physical obstructions that can cause injury or risk death.
An acute weather event can destroy property, which can cause a deep financial burden. It can either put people at risk for future poverty or many are forced to live in precarious and dangerous homes. This can lead to mental disorders as well as put people at risk for obesity and diabetes.
If a home is not liveable post event, this can cause permanent or temporary displacement.. This can contribute to feelings of loneliness and social exclusion, which can put people at risk for depression and anxiety.
Story 1
United States, invisible disabilities
“We didn’t use to get tornados in this part of the U.S…… now we do and that is really scary.
I’ve been told by a councillor I work with, that in case of a hurricane or tornado, which would break the windows, I’m supposed to go to my bathroom, because it’s the only room in my apartment that does not have a window, I am supposed to bring a mattress (I don’t think I can even carry a mattress) to hide under it and stay there until it’s over.”
Story 2
United States, Multiple Complex Medical Conditions
“I don’t have the resources to create a home that can adapt to the climate crisis as well as keep my access needs in mind.“
Considerations
We are asking for the following considerations to help support Disabled community’s health as we transition further into planetary dysregulation.
Include disabled people in climate change policy
Conduct community studies to fully understand the link between health and planetary dysregulation within the wide ranging disabled communities.
Create disabled specific evacuation and relief plans, these should be in consultation with disabled people.
Employment right advocacy for disabled people to reduce vulnerability pathways.
Housing right advocacy for for disabled people to reduce vulnerability pathways.
Reliable, safe, and accessible public transport even during extreme weather events.
ABOUT THE PROJECT
This project was created to showcase the lived experience and expertise of the various marginalised communities being affected by the dysregulation of our planetary systems.
For each “vignette” we interviewed people to both directly quote as well as use as a reference to inform and guide the scientific research.
Each vignette was led by a person belonging to the community in focus. It is part of Centric Lab’s continual commitment to doing science and health justice work that is “for us by us”.
