According to Cathy Basterfield, there is a difference between Easy English and Easy Read. She says one is led by evidence with people who rarely read (Easy English), the other is led by lived experience (Easy Read).
Easy English:
Is grounded in universal design principles
Applies the ISO Plain Language Standard
Applies academic evidence
Consults diverse people with low literacy
The two examples above of how to make a complaint clearly show the differences. The Easy English example has a clear title with an illustrative graphic. The Easy Read example uses marketing images and branding. This corporate presentation requires knowledge of what the images and brand mean.
The intended audience of Easy Read is people with intellectual disability. They don’t learn differently, they just learn in smaller steps. They need to learn the skills in the place they will use them and will need more repetition.
Speech pathologist Basterfield stresses the lack of regard for Easy English with an emphasis on lived experience advisory panels for Easy Read. She asks why people who experience real difficulty reading remain unheard in written communication. Of course, if they can’t read the invitation, how can they find out about such events?
Easy Read is good for some people, but not all the 44% of people with low literacy.
The disability discrimination case involving the Sunshine Coast University Hospital provides a few important learning points. The hospital was found to have caused indirect discrimination to people with vision impairments. Rectifying the long list of breaches of the Disability Discrimination Act reaches into the millions of dollars. But does compliance make for inclusion in the prescribed solutions?
The Sunshine Coast University Hospital (SSCU) was the subject of the late Peter Ryan’s complaint. As a legally blind person he claimed disadvantage in the way access was provided for him. The main point was inadequate wayfinding.
Learning from the court case
A blog article from the Humanics Collective website discusses the issue of the Court’s demands for specific features to be rectified and/or applied. The Court ruled that the hospital did not meet the obligations of the Disability Discrimination Act (DDA) and the Access to Premises Standard.
Many areas of the hospital did not contain tactile or Braille signage or a functional wayfinding strategy. This included lack of luminance contrasts, small fonts, and appropriate signage. In addition, floor surfaces and other finishes, including the use of colour, came under scrutiny as well. This impacted Ryan’s ability to navigate the spaces independently and with dignity.
Beyond compliance is required
Humanics Collective was engaged to improve compliance with the Court’s ruling. They assert that complex environments need to consider more than compliance to standards. That’s because it doesn’t guarantee usability, and equity isn’t always achieved through uniformity. Indeed, many people experience issues with finding their way around hospitals.
In their list of solutions, Humanics Collective includes the use of hospital volunteers to assist people with vision impairment. The use of volunteers was used as a defence in the court case, but the key issue is that many aspects of the building and surrounds did not comply with the Access to Premises Standard. You cannot use volunteers as a work-around to make up for deficiencies in the design.
Wayfinding not just about signage
The goal of a wayfinding strategy is to help people find their way. So installing more of the same signage isn’t necessarily the answer. However, the strategy should at the very least provide the statutory minimums.
‘One key point of contention in the ruling was the interpretation of “replace.” We argued that replacement shouldn’t mean reinstalling flawed signage in the same location, but improving usability through better placement, higher contrast, and greater visibility.’ Image from Humanics Collective.
The Humanics Collective blog suggests the answer is not in more signage but in smarter support. This includes meaningful pre-visit information and training front of house staff to assist people with vision impairment.
Their on-site testing with user groups found that their proposed changes beyond compliance made the space feel easy to navigate. Importantly, users consistently said there is no single vision impairment experience. Consequently, different people use different tools to get around – a cane, a guide dog, signage, and now wayfinding apps on their phone.
The title of the blog post is, “What We Learned from the Court Case: The Sunshine Coast University Hospital ruling and its impact on inclusive wayfinding”. The real learning is not to think management strategies, such as volunteers, are the answer to failings. And make sure you comply with the Access to Premises Standard as a very minimum. Taking a universal design approach to go beyond compliance minimises the risk of indirect discrimination and an action under the DDA.
It’s about the whole journey to and within the building
Everyone should be able to arrive by any means, make their way to the main entrance and to a toilet. They should also be able to find their clinic and practitioner. Hospitals are now relying on digital applications to guide patients. These include screens on which to register arrival and machines to produce a ticket number. Then patients are to locate a screen within the clinic that tells them when their number comes up. Then they are to make their way to the consulting room.
The tall signboard on the right hand side of the image has a black background and very small light grey font. It lists places under Orange Lifts and Purple Lifts. The corridor has a high glaze with lots of reflection and glare. Image from ABC News.
The journey from the front entrance to the consulting room is fraught with difficulty for many people, not just people with vision impairment. It assumes many different abilities in sight and hearing, speech, dexterity, mobility, and digital literacy.
The Court ruled on two things: the breaches of the Access to Premises Standard, and the indirect discrimination under the DDA. It seems from the blog that Humanics Collective wants to do better than just compliance.
Background to the court case
The 2021 court ruling in Queensland is a reminder to designers and builders not to ignore disability access. But many do, and that is probably because they are unlikely to be called to account. Complaints under the Disability Discrimination Act that go to court are rare.
That’s because the person who experiences the discrimination has to make the complaint. And that’s tough. Court cases are very stressful for complainants who often have fewer resources to cope.
The Hospital supposedly complied with the National Construction Code and the Access to Premises Standard. However this was not the case and calls into question the issue of building certification.
This case highlights conflicts of interest could be more common than we know. Both the building certification firm and the access consultants are owned by the same group. Consequently, conflicts of interest can lead to builders ignoring disability access.
The building won numerous awards for Architecture. So this raises questions about what is judged as a good building. Time to start including accessibility for all in the judging criteria for these awards.
Unfortunately Peter Ryan passed away before the Judge handed down his decision. A Sourceable article written by Bryce Tolliday has a lot more detail. The title of the article is Non-Compliant Hospital Costs Queensland Taxpayers Millions.
ABC News in 2023 has an article about the delays in implementing the remediation work after two years. In 2025 the remediation work is still lacking which could lead to another complaint under the DDA.
Why don’t older people want to talk about ageing? Is there really a lack of people willing to talk about older people and ageing? That is, compared to other interest groups. Or is it part of the general stereotyping or prejudice that a new report has highlighted? How can we shape the perceptions of ageing in the media? And what should journalists do?
“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.” RobertFitzgerald AM, Age Discrimination Commissioner
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.”
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 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.
Equal access to sex workers
Almost everyone likes a hug, and sometimes something a little more intimate. The Conversation has an article arguing that the NDIS should pay for sex workers. But being a resident in an aged care home should not be a barrier to having this kind of intimacy either. That’s whether it’s from a sex worker or a partner.
An article in the Australian Ageing Agenda, Addressing sexual intimacy, looks at the issues. “Aged care providers are ‘ill-equipped’ to deal with matters of sex and sexuality.”
Sex work in aged care more than just physical. For some clients of sex workers it is about being close and touching another human being rather than sexual intimacy. It’s about feeling the warmth of another body, feeling their heartbeat and breathing.
The royal commission into aged care also commented that services aren’t acceptable for older LGBTI people either. Some staff and other residents find same sex relationships confronting.
When it comes down to it, older people have the right to access sex and intimacy services just like anyone else. However, those who live in their own homes might be in a better position than those in an aged care facility. Time for policies on this aspect of aged care to be universally designed.
Disability critiques of architecture usually emphasize the need for modification and increased access. But lived experience should be the a new foundation for the built environment. This book reconsiders how we conceive of and experience disability in our world. The Architecture of Disability challenges current modes of architectural practice, theory, and education.
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.
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.
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.
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.”
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 discusses the interconnection between public health, livability, climate adaptation, and quality of life. Full-color photos and illustrations show what is possible in ecodistricts around the world.
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
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) guideis 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.
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.
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.
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.
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.
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.
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.
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.
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.
“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.”
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.
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.
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.
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.
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.
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.
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.
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
imitation or copying others
sharing interest with others
pretend play
La Trobe University has devised a free app, called ASDetectto 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 astate-based autism plan in recognition of the need for community support.
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.
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.
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.
