Category: Human Rights

Shaping perceptions of ageing

An interesting finding in a report on ageism is that there is a lack of people willing to talk about older people and ageing. That is, compared to other interest groups. I wonder if this is true. Or is it part of the general stereotyping or prejudice that the report has highlighted? Are age advocacy groups and researchers invisible as well? The report is about perceptions of ageing.

“It is vital that older people are humanised and valued in mainstream culture, with their voices amplified, and the issues they face told in an accurate and balanced way.” Robert Fitzgerald AM, Age Discrimination Commissioner

A child is kneeling down by the side of a lily pond. Her mother on one side and her grandmother on the other, also kneeling down. Grandfather is standing behind watching them.

Although the Human Rights Commission’s report is about older people, ageism can happen at any age. Young people are just as likely to experience ageism as well. Demographers and marketers divide the population into segments, which isn’t helpful especially when assigning specific characteristics to each group.

The executive summary of the Human Rights Commission’s report begins with a good explanation of ageism:

“Ageism refers to the stereotypes (how we think), prejudice (how we feel) and discrimination (how we act) directed towards people based simply on their age. Ageism remains pervasive and normalised … it is one of the most socially accepted forms of prejudice in Australia.”

Four older men wearing hats sit at a square table in the park.

The media shapes perceptions

Demographers and marketers aside, the media plays an important role in reflecting and shaping how older people are perceived. Finding appropriate experts to talk about older people, and not just ageism, is key. But they have to be aware of their own stereotyping too.

The late Stella Young called out “inspiration porn” for people with disability. We must do the same for older people. Anything that a younger person can do should not become an inspirational story when an older person does it. It might be a human interest story for the media but it reinforces stereotypes albeit positive.

Conversely, older people are more often portrayed as a burden on society. Stories reflect the deficit model of inability, incapacity and vulnerability. Terms such as “the elderly” immediately stereotype everyone over a certain age as all being the same. However, the term “elderly” should not be confused with respectful term “elders” used in Indigenous communities.

Three opportunities for action

No experts: The reports suggests the media and the age sectors should get together to address the expert and advocate gap. Reshaping the narrative on ageing is a must.

Training: The best way to address the gap in media education and training is by the media co-designing training with advocates of older people. The age sector can also support and inform editorial practices on age-related reporting.

Community education: A communication campaign for the broader community is another key opportunity for change. More accurate and diverse representation of ageing as well as the coverage of different age groups is essential.

The title of the report is, Shaping Perceptions: How Australian Media Reports on Ageing (2024). You can download the full report of 46 pages, or the Summary report from the Human Rights Commissison web page.

Front cover of the report. Shaping Perceptions: How Australian Media Reports on Ageing. By the Human Rights Commission.

The full report has some interesting and revealing comments by journalists, producers and editors. Their take on the subject of the lack of experts able to speak to the media is especially enlightening.


Books on inclusive design

This post features four books on the topic of inclusive design, accessibility and social justice.

Living Disability: Building Accessible Futures for Everybody is a book of essays written by Canadians with disability. It expresses their lived experience, their battles, their advocacy.

Front cover of the Living Disability book. It has an abstract background with black text.

The book is about being disabled in public and the privilege of having a private place to call home. It provides cross sectional views from colonialism to cycling, and from art to recycling. The style of writing is engaging and carries the reader through vibrant perspectives on disability justice and urban systems. Order from Coach House Books, or other booksellers. 

Design for inclusion conference papers

Design for inclusion: Accelerating Open Access Science in Human Factors Engineering and Human-Centered Computing is not just about computing. It includes papers on museums and cultural heritage, recycling, product design, urban mobility, vehicle design, door designs, map design, inclusive gaming, inclusive web design.

Front cover of the book of conference proceedings on Design for Inclusion.

This open access book of conference papers addresses age-friendly environments, disability, dementia, learning systems, clothing, digital media and more. Many really interesting papers from around the globe.

Of topical interest is a paper by Satoshi Kose, a well known Japanese academic on the legacy of their 2020 Games. Kose expressed his concern about accessibility in 2016 and in 2024 he reviews the progress or lack thereof. The title is, How far has Japanese accessibility improved with Tokyo 2020 Olympics/Paralympics?

Humans and the planet

Flourish by Design is a book about designing for a better tomorrow. The book explores the difference that design can make for people, organisations, and the planet.

The editors are so keen for change they have made it open access.

Front cover of Flourish by Design. A bright green background with black and white lettering.

Flourish by Design has 32 chapters covering a diversity of design ideas and issues. “Design impacts everyday life, shaping the way we engage with the world and those around us. This is not simply limited to the ‘us’ as human beings but also the many other species we share the planet with.”

Everyone needs low carbon designs

Building for People: Designing Livable, Affordable, Low Carbon Communities. Architect and ecodistrict planner Michael Eliason makes the case for low-carbon ecodistricts drawing from his experience working in Europe and North America.

Front cover of the book building for people.

Eliason shows the potential for new climate-adaptive ecodistricts that address housing shortages while simultaneously planning for climate change. Ecodistricts incorporate social housing, invest in open space, and have infrastructure that adapts to climate change. Eliason also looks at public health, livability, climate adaptation, and quality of life are interconnected. Full-color photos and illustrations show what is possible in ecodistricts around the world.

Race & Racism: Myths, Misconceptions

The Human Rights Commission has produced a guide on 5 common Myths and Misconceptions about Racism. Each of these is explained further and are listed as:

  • Misconception that racism is about individual actions and beliefs
  • The myth of meritocracy
  • Misconception of not “seeing” race
  • The myth that “racism is a thing of the past”
  • Misconceptions about anti-racism
Introduction graphic on the 5 myths and misconceptions about racism.

British colonisation has shaped the way we talk about race and racism in Australia and has ongoing impacts. The Australian Human Rights Commission’s (AHRC) guide is one of self-reflection and education. It aims to support and enhance understandings of race, racisim, and anti-racism. It asks us to stop and think about the various opinions, stories and terms used and think critically about the myths and misconceptions.

Many ideas predate colonisation in Australia built upon re-existing ideas of racial hierarchies that classified humans based on physical difference. The result is ongoing structural and systemic racism. These deeply rooted myths prevent productive conversations to address racism.

“Anti-racism involves actively working to challenge racist policies, practices, culture, and ideas. It requires more than being “not racist”. It involves active decisions that seek to combat injustice and promote racial equity. Developing an anti-racism skillset and practice is an important part of promoting a better and more equitable society.

Myth 4 graphic. The myth that racism is a thing of the past. A woman is taking a photo of a grave headstone as if it were an historical artifact.

It would be useful to have a briefer document with just the key points, although there is an accessible Word version. Concepts and terminology are explained in detail, and the five myths and misconceptions are challenged, explained and discussed.

The AHRC acknowledges the Traditional Custodians of the land, sea, waterways, and sky throughout Australia and pays respect to First Nations Elders past and present. Saltwater People designed the guide.

Disability organisations as social participation

Clubs and societies bring together members with a shared interest which also provides a platform for social participation. The same can be said for disability organisations – with some differences. Disability organisations are a hub of social activity, political activism, and a resource of lived experience for planners. A paper from Sweden looks at this concept focusing on rural communities.

Researchers found that interviewees have extensive social lives and that disability organizations act as a platform for many social interactions.

Two women sit under trees in an outdoor cafe. One sitting on a bench seat at a table and the other is using her rollator or wheelie walker as a seat.

Sometimes acquiring a disability such as rheumatism, prompts people to join groups such as the rheumatism association. Some disabilities cause people to leave paid work so this gives them time to channel their energies into these civic organisations. But it doesn’t end there. Members of these organisations also provide valuable lived experience for local authorities in planning.

There are three dimensions to disability organisations: social participation, political action, and a resource of lived experience. Just on the basis of participation, disability organisations provide good value for their government funding.

Protesters at a disability access rally. A woman is sitting in a wheelchair holding a sign saying access for all. She is wearing a blue jacket and wearing sunglasses.

Disability organisations, and the disability sector as a whole, provide inclusive spaces in which to socialise. The strength of inclusive spaces is they facilitate participation on equal terms. On the other hand, disability-specific places are potentially more flexible and adapted to individual needs. Disability organisations are a form of a disability-specific space which form a base for recognition and a political voice.

Living rural with disability

Living with disability in rural areas is viewed as more of a problem than in urban areas. According to the researchers this is a simplification of how people relate to their environment. Rurality and disability are two different concepts which are not complicated when put together.

The article is titled, “I am a very active person”: Disability organizations as platforms for participation in rural Sweden. The link provides an extended abstract and the full paper is available via institutional access.

A rural road with homes on each side. The homes are painted dark red with white windows.

From the abstract

Disability organizations are places for social interactions and for the accumulation of knowledge about disabilities as lived experiences. They also form a platform for dialogues and political influence work in the local community.

Participation means being included in societal activities in a way that suits the individual’s capacities and ambitions. The role of the public sector also enables participation. That’s because, in Sweden, it supports disability organizations and opens up opportunities to influence local planning.

If more support is given and more disability-specific arenas are created, there will be more open arenas for possible participation. What counts as participation must begin with individuals’ own experiences and values of what they appreciate and need in their daily lives.

Ableism in health care

You’d think health care workers would know about disability, but apparently, disabilities are not discussed or taught in a health care context. Questions over quality of life, ability to decide and choose are all issues that affect people with disability when interacting with the health profession.

An article written by two nurses calls out ableism in health care. Ableism occurs when a person with disability experiences discrimination or prejudice from a health care provider.

A man in a turquoise hospital gown, cap and mask is holding a thumbs up sign. He looks like a nurse or a doctor.

They can underestimate the person’s quality of life or competence which affects their level of care. Patients need to feel safe and not to be fearful of being judged or not being heard.

Case study

The article uses a case study of a 60 year old women with Down syndrome to illustrate the issues during the COVID pandemic. This case is not about the care provider being ableist, but being an advocate for the woman. The doctor was pressured by family members to activate the do not resuscitate (DNR) code when the woman entered ICU. The doctor persisted in advocating for the patient and she eventually recovered.

Communication with patients is key. Patients with cognitive disabilities may face attention, memory and comprehension challenges. Nurses must therefore adapt their communication style, learn about the disability and avoid negative language that insults or demeans.

The authors encourage nurses to advocate for people with disability within health care services and in the design of environments.

Entrance to the emergency section of a hospital.. Co-design and ableism in health care.

Ableism isn’t just about patients – it includes family members, and other health care workers. Knowledge can help overcome stereotypes and stigma and improve health and wellbeing for all. Knowledge also helps nurses and other health professionals to feel confident when engaging with people with disability.

This short summary of Ableism in Health Care is open access, and you can access the full paper in the American Journal of Nursing.

Understanding health inequities

A related book, Health Disparities in the Medical Record and Disability Determinations, contains the proceedings of a workshop. It is open access and the introduction says:

“People with disabilities can be any age, face chronic health conditions or mental illness, belong to a minority group, experience low income or housing insecurity, have limited English proficiency, or a combination of many of these conditions. To better understand the effect of health inequities and the manner in which they affect Social Security Administration’s (SSA) disability programs, the National Academies hosted a public workshop in April 2024 that examined the variety of different experiences of individuals with disabilities and the consequences of those experiences on an individual’s health status, medical record, and SSA disability determinations.”

Engaging people with intellectual disability in research

People with intellectual disability continue to be excluded from research practices. This is often due to social and economic factors such as limited education opportunities and access to services. Exclusion is easily perpetuated when you add systemic bias to the list.

Ethics approval processes often view people with intellectual disability as “vulnerable”. This makes their inclusion more difficult for researchers.

Four people are seated at a table but their faces are obscured. One is writing on a notepad. A coffee mug and laptop are on the table. Including people with intellectual disability.

The design of research methods systemically excludes people with disability and other marginalised groups. Consequently, their voices are unheard in health, employment, education and independent living research.

According to an article from the US, approximately 75% of clinical trials have directly or indirectly excluded adults with intellectual disabilities. Just over 33% of the studies have excluded people based on cognitive impairment or diagnosis of intellectual disability.

New methods needed

In response to the ethics and research design challenges, researchers are finding new ways to adapt their methods. The article discusses three approaches:

1. Adapting research materials and processes into individualised and accessible formats.

2. Adopting inclusive research participation methods.

3. Community participation and co-researcher engagement.

Although inclusion strategies are making progress, researchers are lacking helpful guidance. Consequently, including people with intellectual disability in research in a meaningful way requires more work.

The title of the paper is, Inclusive Methods for Engaging People With Intellectual and Developmental Disabilities in Research Practices. This is a short paper and easy to read.

Technology and wellbeing

A related article on co-designing with people with intellectual disabilities looks at developing technologies. Here is an excerpt from the abstract:

Involving people with intellectual disabilities on issues relating to their mental wellbeing is essential for developing relevant tools. This research explores the use of inclusive and participatory co-design techniques and principles.

Individuals with intellectual disabilities participated in a co-design process via a series of
workshops and focus groups. The workshops helped participants explore new technologies, including sensors and feedback mechanisms that can help monitor and potentially improve mental wellbeing. The co-design approach developed various interfaces suited to varying ages.

The title of the article is, In the hands of users with Intellectual Disabilities: Co-Designing Tangible User Interfaces for Mental Wellbeing.

People with intellectual disability and support workers

Abuse of people with intellectual disability focuses on extreme forms of violence at the expense of everyday indignities. Humiliation, degradation, and hurt have a negative effect on identity and makes it more difficult to recruit research participants.

An article by a group of Australian researchers recommends taking action to support both workers and people with disability for improved wellbeing. Here are the key points from their article:

  • Everyday harms are the little things that upset people, such as making unkind jokes about you, being ignored, or disrespected, are not treated as abuse
  • In our project, we called this misrecognition.
  • We looked at when misrecognition happened between young people with disability and their paid support workers.
  • Much of the time, people did not intend to cause harm, but the other person was still hurt by the things they did or said.
  • We can improve the way that people with disability and support workers work together if people understand how their actions affect other people.

The article is titled, Recasting ‘harm’ in support: Misrecognition between people with intellectual disability and paid workers.

Theatre, research and intellectual disability

This study aims to demonstrate how disability theatre contributes to inclusive research practice with people with intellectual disability. The title of the article is Disability Theatre as Critical Participatory Action Research (CPAR). Here is an excerpt from the abstract:

This article describes how self-advocates (individuals with intellectual disability), theatre artists, researchers, and a community living society create social justice disability theatre as critical participatory research. It demonstrates how disability theatre can contribute
to and advance inclusive research practice.

Disability justice-informed theatre as CPAR has direct relevance to people with intellectual disabilities. It also offers a platform where self-advocates’ diverse ways to communicate and be in the world are honoured. Mentorship generates opportunities for self-advocates to learn, practice, and develop research skills.

The theatre creation process (devising, developing, and refining scenes) is research in itself where tensions are recognized as sites of possibility. Future research should explore strategies, and protocols for power sharing and problem solving within disability theatre.

Autism: What we have heard

The Olga Tennison Autism Research Centre has responded to the NDIS Review Committee’s interim report, What we have heard. In responding they draw on evidence from their research and from autistic people.

The report has 29 recommendations that go beyond the NDIS review to all sections of society. The focus is on children – one in ten Australian children are participants in the NDIS. The recommendations are based on providing supports in everyday early childhood settings and with collaboration across governments and community services.

Longer term support needs are minimised if neurodevelopment vulnerability is detected early and community-based supports are put in place.

Front cover in red and white of the What we Have Heard Report.

When setting up the NDIS the Productivity Commission’s assumption was that about 1 in 150 children would need support. Research at that time showed it was closer to 1 in 69. Currently the estimation is 1 in 31 children are autistic. This figure is similar to those in other countries and indicates diagnoses not prevalence. In addition, autistic people are just as likely to have some of the same challenges neurotypical people face. Intersectionality applies here too.

Community supports in everyday settings

With the right community supports, children can make significant developmental gains and increase their chances of participating in mainstream settings. State and local governments should be key players in the quest to include autistic people in community activities, education and employment.

The title of the report is, Olga Tennison Autism Research Centre: Response to ‘What we have heard’ report. The research centre is based at La Trobe University. They aim to support autistic people to realise their full potential, and to actively participate in the community.

La Trobe University pioneered an autism screening tool which is used on children as young as 11 months. The SACS-R tool, or Social Attention Communication Surveillance Tool, is based on 15 years of research. Key points are infrequent or inconsistent use of:

  • gestures (waving, pointing)
  • response to name being called
  • eye contact
  • imitaton or copying others
  • sharing interest with others
  • pretend play
A young boy in a white T shirt is pointing at something in the distance. The background shows he is at the coast.

La Trobe University has devised a free app, called ASDetect to help parents detect autism in their child. the App is 83% accurate and is for children from 11 to 30 months.

This research paves the way for more autistic people to participate in everyday life and feel included. The Victorian Government has a state-based autism plan in recognition of the need for community support.

Occupational therapy & universal design

Is it enough for the occupational therapy profession to just focus on clients and their occupation goals? Barriers faced by people with disability, are complex and multi-faceted and go beyond specific individual solutions. So, at what point should occupational therapists engage in issues of social justice? And can universal design thinking help?

Disability studies emphasise the dignity, worth and equal rights of all people and draws attention to the discrimination faced by people with disability.

A man in a wheelchair is separated from the crowd by a low concrete barrier. Occupational therapy & universal design.

Two researchers, one from social science and one from occupational therapy, offer an interesting discussion on this topic. They argue that occupational therapy practice and research should incorporate social justice and universal design perspectives. They add that they should join with the disability community to call for a more just society. One way to do this is to also promote the principles of universal design.

Incorporating social justice and universal design perspectives more effectively requires a change of mindset and ways of working. Expanding Person-Centred and Person-Environment theories to understand social and structural barriers is one solution. The occupational therapy profession has the potential to pave the way for more equitable services and policies.

The title of the discussion paper is, Drawing on critical disability and universal design perspectives within occupational therapy and is open access.

From the abstract

Socio-political influences have gained increased attention within the occupational therapy profession. Critical disability studies question prevailing assumptions about disability and how disabling ideologies and practices are perpetuated in society. A universal design approach aims to address issues of inclusion and justice.

This paper discusses how the tenets of critical disability studies and universal design can contribute to occupational therapy practice and research.

We provide ideas on how practice can be guided by the tenets of disability studies and universal design to promote social equity.

Incorporating both perspectives in occupational therapy practice and research requires a change in mindset and ways of working. Occupational therapy knowledge needs to be expanded to scrutinise disabling hindrances hidden within social and structural spaces, and implemented in services.

We recommend working with disability communities to raise awareness and combat disabling barriers at various level of society.

Dilemma of autism disclosure

Choosing whether to disclose that you are autistic is an individual decision. But what happens when an individual tells others they are autistic? Under what circumstances do they disclose their autism? And how can this information help others decide about their own autism disclosure? These key questions were the focus of two studies by Aspect Research Centre for Autism Practice.

Feeling excluded and misunderstood has implications for both physical and mental health. Personal interactions are part of the story, but the way we design policies, places and services also add to exclusion.

There is a lot of research on disclosure for Autistic individuals; however, the information is not easy to understand or use when making personal decisions about whether or not to disclose.

Part of the front cover of the full report with a sign saying I am Autistic.

Study one – disclosing

Most participants participating in an online survey told at least one other person they are autistic. About one third told most of their regular contacts. Only 2% didn’t tell anyone. Half the participants preferred to tell people face to face. Delving deeper into the responses, a lot depended on who they told.

Telling healthcare workers, family and friends generally received a positive response. However, telling co-workers had a higher negative impact. If the individual feels that being autistic is part of their identity, they are more likely to tell others.

Study two – experiences

In study two, participants used a smart phone app to record disclosure opportunities over a 2 month period. Telling others in a conversation was the preferred way to disclose. The experiences of disclosing in different settings was generally positive overall. Surprisingly, disclosing at home had the lowest positive score while the community had a high score.

The researchers found that disclosure led to a wide range of reactions and the decision to disclose was influenced by the context. However, participants learned from telling others, and developing skills in disclosing was important.

Disclosure guides

The findings from these studies were used to inform a set of guides for autistic people and non autistic people. The Autism Spectrum Australia website has separate downloadable guides:

  • Disclosure opportunities resource guide for autistic people
  • Disclosure opportunities resource guide in Easy English
  • Supporting autistic people who may want to disclose guide for non autistic people
Autism disclosure guide infographic. Do I feel safe, Do I have a reason, Do I have emotional capacity, Am I prepared for the response.

The full report

The full report, I am Autistic: Disclosure experiences of Autistic adults, summarises the two studies with more detail than the guides. Two quotes from the report illustrate the importance of identity:

”I didn’t feel I had my own identity until I was diagnosed. I also never felt part of any community until I was diagnosed.”

“Finally knowing where I fit in life and being able to embrace that and then tell other people about my autism – it all is connected and leads to a greater me.”

8-Inclusion needs to prevent discrimination

The 7 Principles and the 8 Goals of universal design have their roots in the built environment and people with disability. We have moved on since their inception to thinking about including other marginalised groups. With this thinking comes intersectionality where an individual can be a member of more than one of those groups. For example, a female refugee with a disability.

The 8-Inclusion Needs framework sits alongside the classic 7 Principles and the practical 8 Goals of universal design. Together they provide a more holistic view of the real lives of people.

A human head shape with a montage of photos of many different people.

The framework seeks to provide a new perspective for shifting the focus from a list of identities to addressing the needs of all people. As such it provides a guide for inclusive designs and interventions that eliminate discrimination. It also provides another perspective on the amorphous term “diversity”.

The 8-Inclusion Needs of All People framework

The results of the literature review formed the basis of the 8-Inclusion Needs framework. Briefly, they are:

1. Access – Ensuring all people can see and hear, or understand via alternatives, what is being communicated; and physically access or use what is being provided.
2. Space – Ensuring there is a space provided that allows all people to feel, and are, safe to do what they need to do.
3. Opportunity – Ensuring all people are provided opportunity to fulfil their potential.
4. Representation – Ensuring all people can contribute and are equally heard and valued.
5. Allowance – Ensuring allowances are made without judgement to accommodate the specific needs of all people.
6. Language – Ensuring the choice of words or language consider the specific needs of all people.
7. Respect – Ensuring the history, identity, and beliefs of all people are respectfully considered.
8. Support – Ensuring additional support is provided to enable all people to achieve desired outcomes.

Individual identities – a list

Identities included in the analysis of research on the lived-experience of underrepresented identities:

    • Gender
    • Race/ethnicity
    • Socio-economic status/class
    • Indigenous
    • LGBTQI+
    • Disability
    • Religion
    • Age
    • Immigrant
    • Illness (physical or mental)
    • Refugee
    • Veteran
    • Neurodiversity

The title of the article is, The 8-Inclusion Needs of All People: A proposed Framework to Address Intersectionality in Efforts to Prevent Discrimination. Published in the International Journal of Social Science Research and Review.

From the abstract

This paper begins by highlighting the current state of inclusion, and then reviews research on the application of intersectionality to address discrimination.

The literature review includes an overview of existing models designed to assist the application of intersectionality in reducing discrimination.

An analysis of research was carried out on the discrimination on 13 individual identities and 5 intersectional identities. A new framework called the 8-Inclusion Needs of All People is based on 8 common themes.

The framework is illustrated with recommendations for application in government and policy making, the law, advocacy work, and in organizations. This goal is to provide a useful framework for expediting social justice and equitable outcomes for all people.