Autism and the social model of disability

A young woman sits on a boardwalk next to water. She has her knees drawn up and is resting her head on her arms and knees. It depicts a level of loneliness or sadness.People who are neurodiverse often struggle to shed the medical model of disability others apply to them. A medical diagnosis is part of the problem – they become a category, a label. This is particularly the case for people with autism. And there are no two people alike. But what they do share in common is a relatively high suicide rate. Why would this be the case?

A paper by Richard Woods explores how the social model of disability can be, and should be, applied to this group. But it might not be enough. Negative language is a major barrier to inclusion based on the medical diagnosis label. Woods goes on to argue that the social model does not always explain how any disability is experienced by individuals. This is particularly relevant to people who are neurodiverse. Categorisation under a label is limiting and does nothing to shift community attitudes and improve individuals’ mental health. In conclusion, the paper calls for the “full emancipation of the autistic population”. An interesting read.

The title of the paper is, Exploring how the social model of disability can be reinvigorated: in response to Jonathan Levitt

Abstract.  Levitt argues the social model of disability needs to be re-invigorated, potentially by adapting the tool for separate countries. The social model has been successfully applied for some disabled groups in the United Kingdom. However, the social model is not implemented for neurodivergent labels such as autism, through negative language of autism, causing severe problems for autistic individuals’ daily lives. The social model can be re-invigorated for autism, removing social barriers by; changing non-autistic people’s attitudes towards autism through ensuring positive language of autism, preventing the categorisation of autism and fully enacting The Autism Act 2009 and The Equality 2010.

Dementia design and equality

An older woman with white hair holds a bouquet of flowers to her face. Her eyes indicate she is smiling.People with dementia are not always seen as having the same human rights as other people with disability. So design for dementia is often viewed as an added extra to existing disability requirements. To help facilitate a better understanding, the World Health Organization published a guide on human rights and dementia. An article from the UK builds on these issues and provides recommendations for policy, practice and research. 

The title of the article is, Accessible design and dementia: A neglected space in the equality debate.

The article can be accessed from Sage Journals, but you’ll need institutional access, and via ResearchGate where you can ask for a free copy of the paper.

Abstract: This paper addresses the issue of accessible design in the context of dementia. It is not difficult to design buildings and outside spaces for people with dementia but you do have to follow clear design principles and values. However, unlike other disabilities, accessible dementia design is still viewed as an added extra and not a vital component of facilitating citizenship. In 2015, the World Health Organisation published guidance on human rights and dementia. People living with dementia are frequently denied their human rights even when regulations are in place to uphold them. This paper will focus on accessible design from a human rights perspective using the PANEL principles. PANEL stands for Participation, Accountability, Non-Discrimination and Equality, Empowerment and Legality. We will then conclude with recommendations for policy, practice and research to ensure that accessible design for people living with dementia does not continue to be a neglected space in the equality debate.

Universal design and talking human rights

A girl holds up a sign that says, Love not Hate. She appears to be sitting on the shoulders of someone in a public street march.Universal design isn’t just or only about disability. But it does have a major role to play in improving the lives of people with disability. The UN Convention on the Rights of People with Disabilities, cites universal design as the way to gain inclusion and equity. So does Australia’s National Disability Strategy. But discussions and actions on human rights often get diverted by politics and ideologies. The way we frame and word our responses can make a big difference in cutting through. But what words and what frame?

A Brilliant Way of Living our Lives: How to Talk about Human Rights by Anat Shenker-Osorio has some good answers and examples. The first part of the document looks at messaging pitfalls and fixes. The second part of the document looks at words that work, and the third part covers common critiques. Here is Shenker-Osorio’s introduction to the document:

“Using language data from advocacy, opposition, political speech and popular culture, I analyzed why certain messages resonate where others falter in the human rights sector in Australia, the UK and the US. Complementing this written discourse were 53 interviews with advocates in these three countries in order to draw out what we wish people believed – the vision for which we’d like to inspire increased activation from present supporters and persuade new ones. Recommendations
here also draw upon previous research and empirical testing across issues related to human rights.”

This article was featured in a longer piece on The Commons Social Change Library. It covers a long list of issues for advocates for all kinds of social change.

Editor’s note:  It is worth noting the change in public attitude in the same sex marriage campaign. It gained momentum when it moved from the right to marry whoever you want to being about marrying the person you love. In that vein, universal design is about the people we love.

 

Christianity and inclusive education

The cupola of a Christian church.Supporting concepts of inclusion is one thing; putting it into practice is another. “The Challenge” is the title of a book chapter about including children with disability in Christian schools and giving them access to a Christian education. An interesting discussion about faith and inclusion using a case study to illustrate points. The discussion gives yet another voice to the inclusion discourse‍.

Abstract  Christian educators advocate that faith and learning should be holistic and integral to Christian education, but is this available for all students? The inclusion of students with disabilities does not have a strong record of implementation within Christian Schools. This chapter briefly recounts the history that led to the legislation mandating inclusion, and discusses the very real issues that concern teachers and parents today. The question posed is: should children with disabilities be enrolled in Christian schools? Responding in the affirmative, nine research-based strategies are described in detail, which provide solutions to the challenges faced in inclusive classrooms. Children with disabilities are capable of learning; and in order to receive a holistic Christian education they need to be included in Christian schools.

“The Challenge”, written by Marion Shields, is a chapter in Revealing Jesus in the learning environment:Experiences of Christian educators. It is open access. 

Consumers, care and ageism

A man sits on a bench in a garden near a building.Are customers the same as citizens? Consumers are part of the market. Citizens are part of society. There are consumer rights and then there are human rights. Older people are treated as consumers of specialised housing products. They are not treated as citizens in their own homes. This is one of the messages to come out if the Royal Commission.

In The Fifth Estate article, Willow Aliento says of the care and retirement living sectors, “…the inquiry found that there had been a shift towards thinking about the aged care sector as an “industry” with “customers”, rather than a social service for older citizens.” This is an important factor because this approach dehumanises residents. Even the retirement living sector is fundamentally ableist because they only advertise “active living”. 

The article discusses how poor design of the physical environments with large, noisy facilities and poor visual layouts contributes to residents’ reduced quality of life and care. it also cover issues of downsizing and pension and assets tests. Complex issues are tackled well in this article titled, How ageist, ableism and inequity are creating “shelter hell’ for older people

 

Design and Inequality

Front cover of the journal. A black background with an orange abstract design.The introduction to a special issue of Design Issues focuses on the way design can reproduce inequality in society. It asks questions such as: In what ways do designers or design processes emerge in relation to social inequalities? How can the discussion of inequality be broadened within design practices? This introduction discusses the rise of design and refers to different concepts and debates relating to design and designing. An academic journal asking important questions about the role of design in exercising power, creating accessibility, capitalism and consumption, cultural reproduction, oppression and neglect. An important contribution to the discourse on design.

The introduction is titled, On the Need for Mapping Design Inequalities, by Mona Sloane. Subscription to the full journal Design Issues is required to read the other contributions.

“This collection offers Design Issues readers insight into the
multi-layered connections between design and inequalities. All the
articles address issues that are both deeply sociological and acutely
concerned with design. They move across themes like the economy,
labor, gender, disability, politics, colonization, material culture,
class, and (social) policy. The essays clearly position themselves in
the context of design inequality by pushing for greater criticality
and reflexivity in design scholarship and practice.”

 

Access symbol: inclusive or exclusive?

International symbol for access. Blue background with white graphic.Confusion still reigns about the international symbol of access (ISA). Is it exclusively for wheelchair users? Or does it denote access for everyone? The ISA was originally created to denote physical spaces for wheelchair accessibility. But its meaning has evolved into something much more complex. 

A study with participants who were a mix of people with and without disability revealed some interesting findings. However, A set of six symbols denoting walking can, signing, Braille, hearing loop, and audio description.some participants who did not identify as having a disability described themselves as having some form of impairment. This illustrates ideological differences about disability per se, and highlights how society uses labels and symbols to define a group or culture in wider society. 

The article has lots of statistical results. The discussion and conclusions are worth a read because of the implications across society. It includes a look at all the symbols currently in use to signify different disabilities. Some participants wanted to see characteristics of themselves in symbols, but this creates uncertainty with other groups. As an aside, the use of the word “handicap” showed up in participant responses, indicating it is still in common usage.

The title of the article is Effectiveness of the International Symbol of Access and inclusivity of other disability groups.

The article concludes, “Perhaps a more effective solution would be standards which incorporate universal design, thereby ensuring equitable and intuitive use of products A blue background with three icons. One shows a woman pushing a pram, the next a woman with a dog, the third, a wheelchair user. The icons are in whiteand spaces and eliminating the need to symbolically represent population-based accessibility. Initiatives such as Design for All (DfA) in Europe, which was adopted in the EIDD Stockholm Declaration of 2004, and the Barrier-Free Accessibility (BFA) program in Singapore, promote a social model of disability by encouraging barrier-free design of products, services, and environments for people of all abilities and under varying socioeconomic situations.”

 

Principles for Accessibility Studies

Brightly coloured graphic figures of all sizes and colours merged together.‘Poietic Design’ is about re-imagining everyday designed objects in ways that reconnect us with our everyday experiences. Objects should not just be useful; they should be intrinsically meaningful both philosophically and emotionally. In his paper, Gian Maria Greco discusses the move from particularist approaches based on disability to universalist approaches. This takes it from one person’s problem to a solution for everyone.

Greco follows on from the philosophical work of Rob Imrie and his discussions on the quest for universality. The title of the paper is, Accessibility Studies: Abuses, Misuses and the Method of Poietic DesignGreco concludes the article with a list of principles for design:

    1. The Principal of Universality: accessibility concerns all, not exclusively specific groups or individuals.
    2. The Principle of Personalisation: one size does not fit all. The design should be able to respond to the specificities of individual users.
    3. The Principle of User-centrality: design should focus on users and their specificities.
    4. The Principle of Epistemic Inclusivity: users and other stakeholders, including experts, are bearers of valuable knowledge for the design of artefacts.
    5. The Principle of Participation: design should be carried out through the active participation of the stakeholders involved.
    6. The Principle of Pro-activism: accessibility should be addressed ex-ante, not ex-post.

You will need institutional access for a free read, or try Google Books. 

Abstract: Over the past several decades, accessibility has been increasingly pervading a vast range of fields, producing a large number of new ideas, theories, and innovations that have already proven to be quite fruitful. A closer look at how accessibility has entered and developed in various research fields shows that said fields have experienced fundamental changes: a shift from particularist accounts to a universalist account of access, a shift from maker-centred to user-centred approaches, and a shift from reactive to proactive approaches. Through these processes, accessibility has birthed new areas within those fields, that have been gradually converging to constitute the wider field of accessibility studies. The nature and position of accessibility studies has now become a central topic. This ongoing progression of conceptual clarification may bear some misunderstanding and misinterpretations along the way. In the paper, I first briefly review the principal traits of the process of formation of accessibility studies; then address some possible misconceptions; and finally, introduce a first, very general sketch of poietic design, a method proper to accessibility studies.

Social ramps for social inclusion

Four panes of a church stained glass window depict different people needing help.Inclusion and exclusion in the social environment discussed from the perspective of the Christian Church is a novel approach. Society has social norms and if people don’t fit them they are often ignored or excluded. They ask the question, “If exclusion occurs because of social skill deficits, who has the deficits?” Is it the one who is different or the one who could accept or change their behaviour? Thinking about how we socially exclude due to notions of social ineptness, often without realising, is an important topic. The authors discuss the classic 7 Principles of Universal Design in relation to social inclusion and show how the Church could do better. 

The article is available from ResearchGate: Social Ramps: The Principles of Universal Design Applied to the Social Environment. It’s wordy and philosophical but worth a read. By Jeff McNair and Bryan McKinney.

Abstract: This article considers a next step in the application of universal design principles, that being universal social design. Using the idea of “social ramps,” we consider seven principles of universal design from a social perspective. Social skill deficits in persons with disabilities has arguably been the reason for exclusion of persons with disabilities. But if the traditions of those without disabilities leads to the exclusion of those with disabilities, then one must wonder who has the social skill deficits? This is particularly the case from a Christian perspective. This article challenges the reader on a variety of levels to reflect on social practices with an eye toward changes leading to inclusion.

 

Accessible housing: Who said what

House half built showing timber frameworkThe international Committee on the Rights of Persons with Disability asked Australia some important questions about accessible housing. The answers depend on who you ask. The Australian Government indicated it was doing OK. Australian Human Rights Commission said a lot more needed to be done, including regulation. The Australian Civil Society Report, which provides the perspective of people with disability, said aspirational targets by industry haven’t worked, so it has to be mandated. 

Australian Network on Universal Housing design has more detail and links to the various documents: Who said what to the CRPD Committee about Australia’s lack of accessible housing. Their webpage also has the latest on the Australian Building Codes Board and the Accessible Housing Options Paper. The call for tenders has closed for consultants to develop the Regulation Impact Assessment.