Disability is NOT inability: What disabled people can contribute to sustainability- Sue Porter
1. Disability is NOT inability:
What disabled people can contribute to
sustainability
Walking Interconnections
RESEARCHING THE LIVED EXPERIENCE OF DISABLED PEOPLE FOR A SUSTAINABLE SOCIETY
Sue Porter
University of Bristol
2. An argument for consideration
According to the United Nations, over 15% of the
world’s population live with disabilities. They are the
world’s largest minority.
In countries with life expectancies over 70 years,
individuals spend on average about 8 years, or 11.5% of
their life span, living with disabilities.
3. Previous research into disabled people and climate change
related emergencies identified that:
1. Disabled people were amongst hardest hit by climate change
related disasters: they are starting from a low point
– Poverty
– Poor housing
– Unreliable transport systems
– Attitudes
2. Disabled people were as interested in sustainability as any
other group, but often excluded from participating
3. Disabled people have experience and skills, however were
viewed as ‘only vulnerable’, their knowledge not well used by
agency planners and emergency services. (Abbott and Porter, 2013)
4. Benilda Caixeta (1954 – 2005)
Despite her best efforts, Benilda
Caixeta was unable to evacuate
before or during hurricane
Katrina… She told me the water
was rushing into her home just
before her phone went dead…
her body and her wheelchair
were found floating inside her
home three days later.
(Marcie Roth, Executive Director,
National Spinal Cord Injury Association)
1. Hardest hit
5. 1. Hardest Hit: attitudes and ethics
“When I inquired about the sheltering needs of
people with disabilities, one Red Cross
operations official told me, “We aren’t
supposed to help these people. The local
health department does that. We can hardly
deal with the intact people”.
(Marcie Roth)
6. 2. As committed to sustainable living
Different life styles
– Should everyone be asked to make the same
changes?
– Different needs in order to live independently
e.g. cooling, lifts
Excluded thoughtlessly
– Feeling judged e.g. use of car not cycling
– Ableist assumptions
7. 3. Experience and skills to offer
What’s so great about independence?
‘…the disability perspective of interdependence is a
practical guide from the margins for making new
choices that may lead to a just and sustainable world—
a concept that reduces the distance between each
other and our environment.’ (Erik Leipoldt )
The experience of being in need and in receipt of care,
which requires an interdependence with others, may also
equip disabled people to contribute to the debates around
sustainability and our relationship with the environment.
8. 3. Experience and skills to offer
Disabled people may have more to offer the debate
around climate change from their different lived
experiences, particularly around the idea of resources
(both external resources and their own internal
resources), which means that they may have a much
more nuanced approach to conceiving of ‘limitedness’.
Environmental/sustainability organisations have pointed
out the problem of ‘mainstream’ views about
‘limitlessness’ – of resources, energy and consumption,
and the need to change attitudes if we are to challenge
this ‘addictive’ behaviour.
9. Individual/social models
Individual/lifestyle model Structural model
Literature and activists advocate
individual actions for
sustainability.
Focus is on sustainable
consumption
Broader societal changes required in
organisation of social life and
embedded power relations.
Structural issues and inequalities
reproduced in environmental
inequalities
It’s the individual that needs to be
‘fixed’ by treatment, cure or rehab.
Society needs to make structural
changes to include disabled people.
Physical and social barriers to
participation need to be addressed
Medical model
Social model
10. So why don’t we make common cause
“I was at a meeting recently which included quite a lot of
disabled people including people with sensory support needs.
At the start the Chair told us what would happen in the event of
a fire alarm. We were told that we should look out for people in
blue vests and then listen out for personalised alarm messages
which would tell us what to do. Nobody seemed to think this was
problematic”.
11. So why don’t we make common cause
“I signed up for a Transition Research Network meeting, and on
checking access was told (very apologetically) that I’d have to use the
public toilet 120 yards down the street”.
“Very interested (although unsurprised) to hear about your experience
regarding the Transition Meeting - I have noticed here in Leeds
meetings arranged in rooms that are "unfortunately not wheelchair
accessible".
“One of the reasons I became interested in this area of research was
from my own experience of developing a chronic illness and finding I
wasn't able to continue with many of my previous pro-environmental
behaviours, whilst at the same time feeling quite judged for using a car
and not cycling etc when I attended environmental events!”
12. So why don’t we make common cause
“Having been involved in environmental and disability
movements I've been surprised by the lack of crossover - and
had interesting conversations with my disabled friends about
how the more 'environmentally sound' shops etc. tend to be
inaccessible, whereas the bigger chains are more likely to be
accessible”.
“One friend in particular complained of green campaigners
advocating the use of bikes over cars etc, [they] often don't
take different forms of embodiment into account. She worried
that such campaigns can even strengthen the discourse of
disabled people are burdens on society”.
13. Walking Interconnections: Who, what, why
Participants were people who identify as disabled and people
who identify as interested in sustainability
Walking and talking together in pairs – using a physical activity to
surface things that we know in our bodies, as well as what we
know in our minds
Using arts based methods, including writing, photography,
drawing and mapping to know and voice different things,
differently
In order to see what happens – are there things from our different
perspectives and experiences that we can offer each other, and
might enhance our thinking about sustainability?
We were thinking of the social and economic aspects of
sustainability, as much as the environmental ones.
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18. Walking Interconnections: Insights from the research
• The relationship between resilience and risk taking, deviation,
problem solving, persistence and creativity;
• The absence of the disabled body within spaces typically
coded as ‘environmental’ – e.g. heritage sites and ‘natural’
landscapes’;
• The recognition that the dominant discourse of
‘independence’, belies the reality and necessity
of interdependence – interdependence offering alternative
and useful conceptions of ‘sustainable living’;
• That ‘ability’ is a dynamic definition for all human subjects;
• That the uplift in some sustainability initiatives – for example,
urban cycling routes - has ironically impacted negatively on
disabled people’s experiences of supposedly shared
walking/cycling paths.
19. Walking Interconnections: Insights from the research
Walking Interconnections has enabled us all, as co-
researchers, to recognise the creative, adaptive,
resourceful dimensions of disability.
Possibly our chief insight has been that disability can
teach us—in the words of Rosemarie Garland-Thomson
“to abide the unexpected, to live with dissonance, to
rein in the impulse to control”.
Poor; housing; transport; social networks
Access; social isolation; poor design e.g. nets on recycling boxes, the bus and the oxygen cylinder
‘Unable’ - Subjugated knowledges not valued
The very same para-transit system that people can’t rely on in good weather is what was being relied on in the evacuation. […] I was on the phone with Benilda when she told me, with panic in her voice “the water is rushing in.” And then her phone went dead. We learned days later that she had been found in her apartment dead, floating next to her wheelchair. […] Benilda did not have to drown.
Disableism
Assumptions are made that everyone can be asked to make the same changes in their lifestyle.
These ableist assumptions can lead to disabled people feeling pressured to reduce energy consumption, even when their particular needs require heating or cooling to maintain even temperatures, access to motorised transport, or to lifts etc in order to live independent lives.
Some disabled people with acquired impairments have also reported feeling excluded from their previous involvement in environmental campaigns, for example because of their growing dependence on the car rather than cycling.
Our feeling was that a problem common to both groups was that of the troubling of the value of ‘independence’ as an ultimate goal we should aspire towards – Why not interdependence, with each other, and with our environment? The lived experience of disability teaches us to value inter-dependence.
Individual or structural change?
One way of conceptualising issues for both the environment and disability is to compare the debates around medical / social models of disability with the debate as to whether its changes to individual lifestyles / social structures which are required to protect the environment.
Disability and sustainability share some disputed ground – that of whether we should be thinking of the ‘problem’ lying with the individual - the medical model of disability where the impairment is the problem; and the model of sustainability where all we need to do is to change the actions of individuals - OR taking a social model view, asking what is it that is embedded in our culture and its structures that makes a bodily difference a real disability, that means we only plan and provide for one ‘normal’ type of body, and which keeps us addicted to our cars, consumption and ‘growth’.
The technical fix is a danger to both movements – we need to change society’s structures in line with a philosophy of equal rights and equal responsibilities
We need to develop an awareness of unquestioning, institutionalised ableism (as we did with racism and sexism).
Yet unthinking ableism is getting in the way ...
Lots of shared issues between environmental and disabled activists – not least social justice
transport,
energy,
access to wilderness
Mutuality
The Walking Interconnections project harnessed arts-based and narrative inquiry methods to facilitate an exchange of knowledge and insights into different experiences in and of the world. These dialogues have allowed us to understand more about different forms of resilience in support of the transition to a sustainable society.
An example of the data
The Walking Interconnections project harnessed arts-based and narrative inquiry methods to facilitate an exchange of knowledge and insights into different experiences in and of the world. These dialogues have allowed us to understand more about different forms of resilience in support of the transition to a sustainable society
The relationship between resilience and risk taking, deviation, problem solving, persistence and creativity;
The absence of the disabled body within spaces typically coded as ‘environmental’ – e.g. heritage sites and ‘natural’ landscapes’;
The recognition that the dominant discourse of ‘independence’, particularly as this is attached to the field of disability policy and practices, belies the reality and necessity of interdependence – interdependence offering alternative and useful conceptions of ‘sustainable living’ (with the attendant practices of trust, negotiation, reciprocity, mutuality, and co-operation);
That ‘ability’ is a dynamic definition for all human subjects (for example, some people feel more energetic in the morning, more vulnerable in the cold, etc.);
That the uplift in some sustainability initiatives – for example, urban cycling routes - has ironically impacted negatively on disabled people’s experiences of supposedly shared walking/cycling paths.
