Creating inclusive communities
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Presented by Emily Steel at the Rights & Inclusion Australia Accessible and Affordable Housing Forum, Sydney, November 2015
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Creating inclusive communities
- 1. Creating inclusive communities Presentation for Rights & Inclusion Australia & ANUHD Accessible and Affordable Housing Forum Sydney, 19 November, 2015 Emily Steel http://www.mdpi.com/1660-4601/12/9/11146
- 2. Living independently and being included in the community (Article 19, UN CRPD) Australia’s National Disability Strategy (2010-2020) 1. Inclusive and accessible communities 2. Rights protection, justice and legislation 3. Economic security 4. Personal and community support 5. Learning and skills 6. Health and wellbeing
- 3. Communities directly impact on health “…continually creating and improving those physical and social environments and expanding those community resources which enable people to mutually support each other in performing all the functions of life and in developing to their maximum potential” (WHO, 1998) People participate in healthy activities when they live in communities that afford them access to cultural, economic, and social participation.
- 4. Threats to the health of communities Disablement occurs in the space between individuals’ capabilities, the tasks they aspire to, and the environments in which they exist. • Imbalance: a lack of balance among work, rest, self-care and play. • Deprivation: results from preventing people participating. • Alienation: a sense of estrangement and lack of satisfaction with one’s life activities.
- 5. National Disability Strategy 2010-2020 Evidence Base www.dss.gov.au/sites/default/files/documents/05_2012/nds_evidence_base_nov11.pdf
- 6. Reciprocity of participation and health Level of participation is linked with stress levels, physiological changes and other indicators of physical and mental health. E.g. The temporary closure of a day centre for elderly people led to increased plasma prolactin and cortisol (hormones that indicate psychological stress). Participation is a good predictor of quality of life among people with disability. Law, Steinwender & Leclair, L. (1998)
- 7. What is the relationship between community environments and inclusion? Inclusion is more about interdependence than independence. Is there a shared (societal) responsibility for the structural restrictions on one’s health that cannot be addressed by individual agency alone? https://www.youtube.com/watch?v=R_AEQbxoez8&feature=youtu.be
- 8. ICF Health condition, disease or disorder Body functions and structures Activities Participation Environmental factors Personal factors Functioning and disability Contextual factors helps us to think about and describe people’s health and wellbeing
- 9. Findings from the Equipping Inclusion studies Based on a survey of 100 Victorian adults living with disability – Supports include assistive technology devices, home modifications, personal support and community environs – People make trade-offs and ration their participation – Accessible and inclusive home and community environments are essential for mobility, a necessary capacity for participation.
- 10. …. bumpy and steep crossovers are extremely difficult to navigate… my head moves too much for my chin to remain on the chin control…nearly impossible to get to the park…. …when a shop is only partly accessible and the specials are in an area where there is no accessibility…
- 11. Environmental factors influencing inclusion Physical Attitudinal Socio-economic Institutional Virtual
- 12. “It only has one small step” “There is just a step into the shower” “Parking is close by” “No amount of smiling at a staircase will turn it into a ramp.” Stella Young, 2014
- 13. Collective action to promote inclusion • Participatory planning, implementation, and evaluation (health enhancing) • Attempt to modify the sociocultural, political, economic and environmental context to achieve health and wellbeing. • Focused on population rather than the individual Desired outcomes: Prevention of problems Increased engagement and participation enhanced well-being Justice for individuals and for the collective
- 14. References and resources • Aids and Equipment Action Alliance: Making Participation and Inclusion a Reality. www.aeaa.org.au • Disability Inclusive Research Collaboration. Disability Inclusive Research Principles. http://www.cds.med.usyd.edu.au/disability-inclusive-research-principles • Law, M. Steinwender, S. & Leclair, L. (1998). Occupation, health and well-being, Canadian Journal of Occupational Therapy, 65, 81-91. • Layton, N.; Wilson, E.; Colgan, S.; Moodie, M.; Carter, R. (2010) The Equipping Inclusion Studies: Assistive Technology Use and Outcomes in Victoria; Deakin University: Melbourne. • Layton, N (2014). Assistive Technology Solutions as Mediators of Equal Outcomes for People Living with Disability; Deakin University: Melbourne.
- 15. References and resources (cont’d) • Layton, N., & Steel, E. (2015). “An Environment Built to Include Rather than Exclude Me”: Creating Inclusive Environments for Human Well-Being. International Journal of Environmental Research and Public Health, 12(9), 11146-11162 • United Nations. (2006). Convention on the Rights of People with Disabilities and Optional Protocol. Geneva. • World Health Organisation, & World Bank. (2011). The World Report on Disability. In T. Kahane & B. Ross-Larsson (Eds.). Geneva. • WHO (1998). Terminology for the European Conference on Health, Society and Alcohol. Copenhagen. • WHO (2001). International Classification of Functioning, Disability and Health. Geneva.
Editor's Notes
- On a societal level, the disability rights movement has clearly articulated the social and political nature of disability, diluting the dominance of biomedical discourses and prompting legal recognition of a more holistic notion of health and wellbeing [15]. Societal responsibilities for health and inclusion are recognized in international legislation drawn from a human rights perspective. The complexity of translating disability rights into improved outcomes, even with political support and regulatory incentives, is acknowledged in other studies [52]. Findings in this paper illustrate the imperative for professionals working with humans and with the environments and contexts in which humans live to identify and address mismatches that result in disablement. Professionals should advocate for and enact systemic, as well as local environmental change, and be pro-active to ensure that benefits are shared across communities.
- Communities have a direct impact on the health and wellbeing of individuals.
- Disability correlates with disadvantage. Poor people, women and older people are more likely to experience disability. Not all people with disabilities are equally disadvantaged: people with intellectual impairments and people with mental health conditions often do much worse. The World report on disability highlights the disabling barriers which make life difficult for people with disabilities. The key message is that these barriers can be modified and prevented. (World Health Organisation & World Bank, 2011)
- It has been noted by the Productivity Commission (2004) that disability discrimination in one area of community life can have a negative flow on effect in others. For example, “accessible public transport can yield most benefit only when destinations become accessible. Discrimination in education feeds into limited employment opportunities - and access to both requires accessible transport and buildings. Limited employment opportunities, in turn, affect income levels and opportunities for social participation.” Accordingly, reducing disability discrimination in one area of community life can have flow on benefits in others
- how do people’s experiences of community environments inform our understanding of the relationship between environment and inclusion?” This entails focusing on the standpoint of the person with disability and addressing the multiple tangible and intangible aspects of environment which influence their outcomes, at all available opportunities. Competent and ethical professionals, working with people with disability and across disciplines, are in a strong position to enact change that enhances wellbeing and inclusion.
- The ICF includes elements that traditional or clinical perspectives on health and disability did not: environmental factors personal factors ICF describes ‘disability’ as the result of a sub-optimal fit between the person and their environment Disability can therefore be defined as impairment of body structure or function combined with subjective experience of disablement brought about by environmental barriers. Should environmental barriers exist, the effects of impairment are magnified and the person experiences disablement
- Respondents identified having between one and twelve impairments or long-term health conditions, and reported nearly 60 separate diagnoses, the majority relating to physical impairment (59%), followed by multiple (14%), sensory (14%), psychological (6%) and neurological (5%) impairments. Nine percent of the sample identified cognitive impairments such as acquired brain injury or as secondary effects of other conditions such as the late effects of polio. There were more female (59%) than male (41%) respondents, grouped in age from 18 to 24 (7%), 25 to 44 (26%), 45 to 64 (50%), and over 65 (16%). Respondents’ living situations differed, with the majority living in private dwellings (92%). Of these, 65% reported living with a spouse or partner, and 27% with family members. Two percent of respondents lived in a supported group home, and a further 2% lived in a larger congregate care residence. Seventy four percent were unemployed, with 21% engaged in volunteer work and 4% interested in working or volunteering but reporting they are currently unable to due to lack of suitable supports and accommodations.
- Participants frequently reported concurrent experiences of inclusion and disablement, and environments with a mix of barriers and facilitators. Environmental factors which present a barrier for some, are a facilitator for others. Path of travel is a key concept, not just disconnected accessibility features.
- Built and non-physical elements of places are capable or creating or eliminating the experience of disablement. multi-dimensional and subjective nature of the environment, its interactions with individuals, and significant relationship to inclusion and wellbeing Physical (footpaths, shop entrances, churches, portable ramps, trams, reception desks, seating) Virtual (computers, communication devices, online resources) Attitudinal (staff assistance, friends, landlords) Institutional (locked accessible toilets, kerb cuts, airline policies, attendant support, parking proximity, talking timetables) Socioeconomic (income support, concessions and allowances, flexibility in spending on supports).
- Confidence, security, information and forms of social interaction and assistance are all relevant to the usability of physical space. Individual participants identified many possibilities for removing existing environmental barriers, and described potential outcomes should this occur. Any one individual has limited agency within societal structures. People with disability experience higher costs of disability, a thinner margin of health, and vulnerability to significant capability gaps in non-inclusive environments [40]. Systemic environmental changes necessitate collective responsibility for the creation of inclusive environments, rather than reliance on individual agency or governmental regulation. Professionals hold moral and ethical responsibilities in relation to inclusive environments and are encouraged to perceive and co-ordinate action on environmental barriers.
- Occupational therapists for example has predominantly addressed local adaptation of the built environment related to an individual and their impairment. Beyond remediating issues of individual ‘fit’ between one individual and one environment, this transactive understanding of human functioning and health in context, along with human rights advocacy by people with disability, has informed society’s understanding of the nature of disability and highlighted discrimination and exclusion that occurs due to barriers in public buildings and services. This means, rather than being perceived as outside the scope of professionals’ practice, advocacy for systemic change is necessary to bridge the capability gaps identified by people with disability [47]. Restricting environmental interventions to local adaptations risks a failure to respect human rights, and misses the opportunity to facilitate widespread inclusion across communities. Research has shown that participation in intervention planning itself is health enhancing and that clients meet their goals more effectively and efficiently when they are actively involved in the planning process. Participants identified barriers that limit their participation and “cost” them their inclusion; a cost borne individually. Recent work outlines a “reversed” position of responsibility with respect to access and inclusive communities, that focuses on the cost of non-social [35] and non-inclusive environments [24,36]. Termed the “economics of inclusiveness”, costs are calculated over all community members (parents with prams, elders with shopping trolleys etc.) who may benefit from interventions such as kerb cuts and accessible transport [37,38]. Such a shift in approach and accounting would mean, for example, that architects conceive access not as a constraint upon design, but as a “major perceptual orientation to humanity” [39] (p. 112). Systemic change in community environs is usually enacted by local and regional government authorities or individual businesses. This is often in response to complaints under disability discrimination legislation, or as part of regulatory procedures in building and planning. Examples include visual and tactile surfacing of roads and paths; retro-fitting entrance ramps, or providing “disability awareness” training. From a human rights perspective, the state has a key role in supporting inclusion through its tools of public administration; usually laws and regulations. Pursuing regulation is one obvious route to change, however some authors question the use of regulation as the primary avenue of change, as it may position inclusion as a compliance problem. Non-regulatory policy instruments that can change cultural attitudes, as well as physical infrastructure, are required [51].