Presentation at the Bristol ‘Untold Stories’ event: Arnolfini; July 27th 2019

In my last novel, CULL, published at the beginning of the year, I envisioned a dystopian ‘other England’ where life for disabled people was almost unbearable, where a bill had been passed to force the elderly and disabled into huge institutions and where the government was developing an experiment in state sponsored euthanasia as a cost cutting method.

It’s a blast!  No seriously!  I made it as funny and sexy and sharp as I could and it is, I hope, an exhilarating read BUT my research for it included real stories from our community, real experiences of abuse and isolation, fear and aggression from the last few years of welfare ‘reform’ as well as extended research into the Nazi T4Aktion programme of the 1930s.  I wrote CULL as a warning.  We are precariously close to the arse end of discrimination. It is a novel intended to shake the trees.

Although I must tell you this excellent novel is available in all good bookshops, including the bookshop downstairs, I am actually here today to start a discussion with you about another area of movement and change that needs our close attention.

Climate change.

We now know that climate change is a reality. Not only climate change but RADICAL climate change – protracted periods of heat and cold, storms, hurricanes, drought and flood – mass migration.

Possibly, hopefully, we are beginning to finally wake up to this. Extinction rebellion, Greta Thunberg, and we as disabled people need to leap right into the centre of this potential upheaval. Why?

Because if we don’t get in on this, we might die. Simples.

In May last year Marsha Saxton and Alex Ghenis from the World Institute on Disability wrote:

The clear evidence from past and current natural disasters and refugee situations shows that people with disabilities have a lower survival rate than those without disabilities, and may even be neglected or left to die. Photo journalism showing the impact of Hurricane Katrina in the southeast U.S. in 2005 documented this with tragic photos of dead people in wheelchairs as crowds of other displaced people streamed by.

In 2005 Hurricane Katrina’s death toll was 1,836 people. Old age was a contributing factor. Of those who died, 71% were 60 years or older. Half of them were 75 or more. There were 68 in nursing homes, possibly abandoned by their caretakers. Two hundred bodies went unclaimed. Over 700 people were unaccounted for. The storm killed or made homeless 600,000 pets

A key issue was poverty. Poorer people could not afford to evacuate. And, in America, as in UK – as all around the world –  disability and poverty often share a bed.

During Hurricane Katrina, Marcie Roth chief executive officer of the Partnership for Inclusive Disaster Strategies, attempted to coordinate an evacuation from Washington, D.C., for a quadriplegic woman trapped by flooding in New Orleans as the levees broke.

“She and I were on the phone when she said to me, ‘The water’s coming in,’” Roth recalled. “We lost our contact and we found her body several days later.”

Roth stressed the importance of people with disabilities participating in community disaster planning.

“It’s a critically important distinction that we need to make sure that [we’re] planning with people with disabilities, not just for people with disabilities,” Roth said.

“Whether or not people should evacuate in advance, they should be given actionable information

Twelve years on from Katrina, another series of Hurricanes hit the Americas. The journalist David Perry wrote at the time of Hurricane Harvey that:

Stock photo from Katrina

There are four basic different types of needs related to disability that emerge in the aftermath of disasters: health maintenance (medicine, electricity, medical care), ability to move in and through physical areas, effective communication access, and what the experts call “program access.” Some of these needs are obvious: People who depend on dialysis or oxygen need power. Diabetics need insulin. Chemotherapy patients need hospitals that work, and so forth. A wheelchair user might well not be able to cross flooded areas, climb stairs to escape rising water, or access a shelter. Shelter space might also be inaccessible because messages about locations aren’t communicated in sign language or Braille. Such spaces might be too loud or chaotic for people with sensory integration needs (as would be true for my son, who has Down syndrome, many autistic individuals, and many others).

Needs can overlap. Many people fall into more than one of these categories, and access to the resources required to meet these needs is never distributed evenly. The consequences of a natural disaster for any individual will be intensified not only by specifics of the disability, but also by other forms of inequality and marginalization such as race, class, gender or sexual identity, and legal status. Disabilities can also be temporary or changing, especially when disasters bring injury or new health risks. Disability disaster response therefore requires understanding all the varieties of disabilities and the inequities of our society—and too often requires fighting against governmental structures built without disability in mind

But this is all about the aftermath. The aftermath, my friends, is too late!  If we say nothing about us, without us then surely, we need to step up?  How can we reach out and engage? We need to ensure that we are included in the development of our community resilience our ability as a community to respond to and recover from a climate event.  If we start those conversations now- if we involve ourselves in local initiatives now, perhaps when things get really tricky we will be part of the solution too.

David Perry continues: What needs to happen in other places before the next disaster strikes?

Where this [inclusive disaster response] works is where there are pre-existing relationships between people in the emergency management community and people in the disability stakeholder community. Where it doesn’t work is where those relationships don’t exist. It’s too late to build those relationships once the disaster has come.

So long story short – as disabled people, already facing down challenges from a hostile environment and potential poverty, in UK we are also now faced with other uncertainties. Here is where our imaginations, our resilience and our community can make a big difference. We have a hell of a lot to teach others about adaptability and acceptance, access and recovery.  So, don’t feel that you can’t be part of Extinction Rebellion – in fact ensure you speak with them and ensure that they have considered inclusion in their actions and the potential detrimental effects on disabled people of their actions. If you block traffic for someone who can’t access public transport what then? If you stigmatise people for using certain plastic instruments which they need in order to eat and drink, what then?  How can we fight for change as an inclusive community so when the shit hits the fan, we, as disabled people can support and encourage others as well as using our powerful networks and planning ability?

For example, a nursing home could become an emergency centre where people could gather rather than abandon. How about people like me with service dogs, becoming part of a search and rescue or post event therapy dog community?  I don’t know –but I intend to use my imagination and my creativity to explore the possibilities. Let’s get talking!

And now, I leave you with a few paragraphs from my last novel CULL from the chapter titled ‘The Storm. ‘

The Storm

The storm is approaching the city exactly as predicted by the crows, although humans, with their limited senses, have yet to notice. The wind has dropped, and a headache of heat and stillness has descended like a sticky spider’s web over Cambright. The immense thundercloud approaching is still out of sight, just over the horizon, but it’s coming closer every second. It is breathing in, sucking up moisture and light and energy. In the hot numbing pre-storm hush, many people become woozy, have to pause breathless and put a hand against a wall for balance. Like a mountain unchained from the earth, the cloud closes in. In air-conditioned shops and cafes they only notice the atmospheric change when the lights flicker and the cloud above blots out the sun. Across the city, people come to their windows, pointing at the darkness on one side of the sky. Anxious parents begin to move towards the doors to call their miserable hot children inside.

Clouds gather

And then the storm breathes out WHHHHHHAAAAAAA and the dry warm wind tsunami hits. Trees shake like dogs. All things not weighted down shift, skitter, flap and tumble ahead of the thunderhead. And then it brings the rain.

It is a monstrous thing, this storm, crackling with electricity, ravenous and with such ill humour. It seems to open great chunks of sky and pour the rain through without bothering to let it coalesce into droplets. Rivers of water sluice down from above, soaking the hot tarmac, the dry dusty ground, the sun-blasted tiles, and everything steams and splutters. In the streets, people are running for cover, newspapers and briefcases held hopelessly over their heads. Clothes turn transparent, water shines in the eyes of the young. Not even the bravest stands still beneath the oncoming weight of the weather. The smell is sensational, earthy, exotic, exciting, but no one pauses to breathe it in. The storm stomps on the city, and everyone must find shelter.