Category: Magazine and newspaper articles

General interest stories about inclusion, accessibility and universal design.

Older people in the media

Words matter. Our perceptions, beliefs and attitudes are shaped by the words we see and hear. The media relies on words for their work which has the power to influence, uphold or denigrate. Journalists must check their words for perpetuating stereotypes that harm, albeit unintentionally. The ageing sector must do the same. Yes, even older people perpetuate stereotypes in the language they use too.

The Australian Human Rights Commission has produced a report on how the media reports on ageing and older people.

“How we view the world and those around us is largely shaped by what we read, what we hear and what we watch. Media informs how we see
and treat others, and even how we see and treat ourselves.”
– Robert Fitzgerald AM, Age Discrimination Commissioner

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

Ageism is one of the most socially accepted forms of prejudice in Australia. The media industry and the age sector must improve the accuracy, quantity and quality of coverage of the issues.

Image from the report showing a bank of screens and monitors and a woman sitting looking at them. There is a keyboard on the desk.

In the video below, Robert Fitzgerald explains that the overwhelming portrayal of older people is in the negative. This is particularly so when talking about health and aged care. The framing is that of a burden on society without recognising how this language impacts older people themselves. It also impacts policy-makers and private enterprise when it comes to providing goods and services.

Positive portrayals can also stereotype

The media and marketing professionals like to segment the population into age groups. They assume people in these age groups all have something in common or behave in a particular way. They also assume that each group is different from each other and have little in common. This is stereotyping. Even positive stereotyping is harmful especially when pitting older and younger cohorts against each other.

Highlighting a few prominent older Australians as being highly productive or contributing to society is portrayal by exception. It is only their age that makes it a story. For example a woman of 90 years, usually described as a “grandmother” taking a parachute jump. The only other time parachute jumpers make the news is if their parachute failed.

Ageing is not a charity case any more

Ageing and aged care left the charity model last century, but some aspects linger on. For example, special weeks or international days for older people only serve to perpetuate stereotypes and patronise. Stereotyping behaviour is difficult to overcome – it’s ingrained into our culture.

Key findings from the report

There are known and real issues with Australian media portrayals of ageing and older people. The prevailing narrative is of decline, frailty and vulnerability. Their everyday lived experience is invisible to the media.

Australian media representations reflect a broader mainstream culture that undervalues older people. Their issues are often regarded as ‘less than’ those affecting other groups.

The culture of undervaluing older people underpins media industry drivers. Some of these briefly include:

  • Lack of access to subject matter experts – people who can speak on ageing
  • Invisibility of age withing the diversity and inclusion space
  • Time, resources and lack of experienced journalists
  • Business drivers and ‘click bait’ nature of reporting especially around intergenerational tensions.
An older woman sits in an armchair. She is wearing a purple knitted jacket and is smiling into the camera. Ageing is ordinary.

The report reviews current knowledge and evidence on age and ageing and the way Australia media presents it. The title of the full report is, Shaping Perceptions: How Australian Media Reports on Ageing. There is also a summary report with the findings and opportunities for change. Even advocates for older people can fall into the trap of using language that patronises or emphasises ‘specialness’.

See also Ageing is ordinary and also Ageism, Attitudes and Stereotypes.

Spaces for all ages

Urban landscape with shade trees and lots of casual seating with people sitting.

Viewing older people through the prism of health and disability ignores their continuing contribution to society.  The 2015 Intergenerational Report talks of the ‘three Ps’ – population, participation and productivity. But where is the fourth P – policy? 

Emily Millane discusses the issues of ageism, employment and social participation in a percapita report. She asks, where is the fourth P, policy, and argues we need policies to overcome age discrimination in all its forms. This includes the design of public spaces, parks and streets. Urban design plays an important role here. It needs to capture all ages and foster interaction between generations. This strategy might be easier than changing community attitudes in the short term.

Older people are considered lesser value than others – something highlighted by the Royal Commission into Aged Care. By perpetuating the idea of being less capable or being a burden on society affects attitudes that are hard to shift. It also affect attitudes older people have about themselves.

The report is titled, Spaces for All Ages: policies for an inclusive Australia.

This report follows on from The head, The Heart and The House. 

A public toilet is a human right

Most people can stall their hunger or thirst for a while, but some people find their bladder and bowels are more demanding. Access to clean usable public toilets are essential for everyone, but their designs are often lacking.

Joe Manton writes about the issues of gender inclusive toilets in the Spring 2024 issue of Access Insight.

All gender restroom sign. Black background with white text and icons.

A previous post discussed the assumptions underpinning the assignment of gender neutral toilets. Manton provides a more detailed perspective using the lived experience of people. Here is a sample of the topics covered. 

Toilet anxiety and security

Public toilet anxiety can arise for different reasons. For some it is a phobia about being able to use the toilet or being too far from one. For others it’s a fear of having an accident in public, other people hearing you, cleanliness, or sharing a space with others. 

Gender diversity

People who are gender diverse often lack access to a safe public toilet. They can be ridiculed, abused, threatened or assaulted if they use single gendered toilets. Consequently, something as basic as going to the toilet can cause increased levels of anxiety and depression.

When forced to use all gender toilets, women feel unsafe, and men feel constrained in their interactions with women in this public space. Social and cultural perspectives also impact the way people feel about using public toilets. 

Toilet wait times

The USA Potty Parity movement says that in busy facilties, women can wait up to 34 times longer than men. They also have to spend more time than men. Time to remove clothing, and at times, deal with feminine hygiene, see to children or help an older relative.  

What the standards say

The current status of the National Construction Code includes mandated requirements for sanitary facilities. Depending on the building classification it includes, male, female, ambulant male, ambulant female, unisex accessible, and accessible adult change facilities. 

There is no mandated requirement for all gender toilets, baby change areas, and assistance animal relief areas. 

Manton argues that there is convincing evidence to retain separate male and female toilets. Being trans or non-binary is not a disability and some feel uncomfortable about using an accessible toilet. It also signals to others that their identity is in some way a disabling condition. In a way, it is, because without suitable facilities they are disabled by design. 

Unisex accessible toilets

The number of unisex accessible toilets in buildings according to the Construction Code is based on disability. It does not account for the number of other people who need to use this facility. Often a baby change table is installed, so parents with prams and small children also use them. 

Manton provides detailed information in the article about standards and discusses all gender toilets in detail. She also covers toilet design considerations and proposed amendments to the Construction Code. 

The title of the article is, It’s a Right to go to the toilet – Not a Privilege. This is an update to the previous article in 2021 All gender toilets: We just want to go to the toilet.

A gender neutral toilet sign with a graphic of the top half of a person and a graphic of a wheelchair user. The text says this facility is for everyone.See also the excellent discussion by Nicole Kalms and Laura McVey in Commentary on Let Us Pee.

They argue “the proposed legislative changes for the provision of ‘all gender’, ‘gender-neutral’ or ‘unisex’ toilets operate under an incorrect assumption that gender neutrality will lead to greater inclusion”.

Inclusion and wellbeing by design

Imogen Howe writes that wellbeing goes beyond the physical and mental health of an individual. It is a holistic concept of health and wellness. It encompasses social connectedness, belonging and inclusion and the ability to contribute meaningfully to society. Wellbeing is also about feeling valued and respected, and environmental contextual factors such as connection to community and place. She explains wellbeing by design as:

“The relationship between the built environment and wellbeing is well known. But, when it comes to wellbeing, buildings and urban spaces frequently disappoint people with disabilities by being inaccessible, stigmatising, creating the feeling of being out-of-place, a misfit in places you have a fundamental right to be in.” Signs such as the one pictured, say that “we didn’t think about you in our design”.

A sign with the international symbol for access, blue backgound and white text and graphics. The text says, access at side of building with an arrow pointing the way. Article Wellbeing by design.

Exclusion of people with disability because the problem arises from older buildings is no excuse. Howe says building upgrades are essential when considering the barriers beyond access standards. She says that designers must consider psychological and emotional aspects of wellbeing as well. It’s more than just getting into a building.

Howe also says that designers must be respectful of users’ energy and time. People with disability and/or long term health conditions have less energy available to them each day. It takes longer to do basic tasks, so they also have less time to spare. The built environment can whittle away, bit by bit, precious energy and time so there is nothing left for fun things.

The title of the article is Wellbeing for Whom? and published by the Australian Institute of Architects magazine, Architecture Bulletin.

What do you think accessibility means? Does it mean compliance with AS1428.1 or the ability to enter a building and spaces within it? Is it about usability? Even if it means all these things, the word accessibility is too limited to encompass all the considerations for people with disabilities…

Imogen Howe, Wellbeing for Whom?

Health and wellbeing by design

“We shape our buildings and thereon, they shape us” is an oft quoted Churchill saying. I wonder if he knew how much they also shape our health and well-being. Koen Steemers’ article on this topic outlines the definition of wellbeing and health and the implications for architecture. He also provides “rules of thumb” for design based on extensive research.

“Whether people are healthy or not, is determined by their circumstances and environment. To a large extent, factors such as where we live, the state of our environment, genetics, our income and education level, and our relationships with friends and family all have considerable impacts on health.” World Health Organization: The determinants of health.

A young man is in the middle of a residential street. He looks like he is jumping or dancing.

Steemers acknowledges there is no one-size-fits all for healthy design. So the aim is to optimise every aspect wherever possible. It is interesting to note that he puts accessible housing into the list as a must towards the end of the article. Architecture for well-being and health is a very comprehensive and readable guide for the built environment professions. The reference list is also useful.

 

 

Home designs for living

Designs 4 Living is a magazine by Todd Brickhouse in the US with a focus on home designs for people with disability and older adults. The latest issue covers a wide variety of design solutions. They include home lighting, bathroom and kitchen trends, home workplaces and cognitive and sensory solutions.

Front cover of Designs 4 Living showing a sunset over a lake with birds flying above.

Lighting the home

As we get older our vision degrades and in many instances and higher levels of illumination become more important. However, it’s important to avoid glare and “pooling” of light. Indirect light sources such as recessed lighting under and over cabinets is good. LED lighting uses less power and lasts much longer.

Different scenarios for different rooms in the home are presented in the article along with a useful list of terms used for lighting and illumination. There is a link to a free guidebook to lighting the whole house.

Bathroom trends

Making a bathroom safe and accessible is just the beginning – why not make it look stylish too. That’s the content of the article by Mike Foti. While white tiles are still popular, light wood grains have gained popularity and come as tiles and panels. Flooring can provide the necessary visual contrast to the walls and fittings. Shower and bathroom treatments that don’t involve grout are a bonus. The article has more with links to useful solutions.

Cognitive and sensory solutions

Shelly Rosenberg is an interior designer with ADHD and her article is framed around 8 human senses. We all learned the five senses at school but we need to add Vestibular, Proprioception and Interoception. She begins with vision and the quality of light and level of visual ‘busyness’.

Smell is about air quality, fragrance, memory and mood. Building materials and furnishings can give off toxic gasses. Controlling moisture temperature and using air filters and purifiers are some of the solutions. Rosenberg goes through all 8 senses

Gen X and Baby Boomer needs

This article explores the divergent needs of Generation X and Baby Boomers as they age. Marketing professionals like to label different age groups, but the old labels for older adults don’t gel with Gen X. Indeed, why should older people wear a label at all? And terms such as Silver Tsunami present older people as a burden. An interesting discussion.

The Summer edition 2024 of Designs 4 Living also has items on pets, and workplaces.

Architects have a creative responsibility

A creative workshop scene. A woman is holding a pair of scissors, another is holding a pen over paper.An article in Architecture and Design magazine makes the point that architects have a creative responsibility to ensure designs are not just accessible but also inclusive and future proofed. In most cases renovating a building to be accessible costs significantly more than making the building accessible from new. Consequently, it makes economic sense to make places and spaces inclusive from the beginning. There are three easy changes architects can make to their design process to make more inclusive places and spaces. First, involve people with disability and other marginalised groups in the design phase. In other words, co-design. Co-designing with a diversity of building users is an essential element of a universal design approach. Architects get to understand the challenges and barriers as well as the solutions that come from this process. The second change is to look beyond access consultants. Access consultants typically focus on regulatory compliance to make sure they meet standards. However, if given more scope, they can also provide solutions beyond the standards within a co-design process. The third change is to avoid exaggerating the design challenges. The co-design process brings practical solutions to the table that are often outside the usual architectural ideas about universal design. For example, the cost of a ramp can be saved if it can be designed out. The article concludes, “Ultimately, the true measure of architectural excellence lies not just in the beauty of the structures we create but the lives changed by making accessibility non-negotiable”.  The title of the magazine article is, How architects can help create a more inclusive Australia.

Some background research

a series of black icons on white background depicting people of all shapes and sizes, including a baby in a stroller, a person with a can and a wheelchair user.A research project by Ielegems and Vanrie compared the costs of new-build with renovation. They found that both have costs but they are significantly lower for new-builds. The aim of their study was to find a research method to calculate the cost of universal design. Their paper is necessarily technical and covers different types of public buildings. The findings vary according to the scale of each building.  However, economic arguments usually favour the users of the building and not the builders and developers. Consequently, going beyond compliance becomes a political and ethical decision rather than an economic one. The title of the article is, The cost of Universal Design for public buildings: Exploring a realistic, context dependent research approach. It is covered in more detail in a previous post and was cited and downloaded from the CUDA website for the magazine article above.  

Ageing in place, ageing and place

A fireside, a hot drink in a mug and slippered feet up on the recliner.Ageing in place and ageing and place are intertwined but distinct. Both place and home need to support people as they age – one is insufficient without the other. Generally, ageing in place means ‘staying put’. That can mean the staying in the same home or staying in the same community or neighbourhood. 

Research with older people suggests that ageing in place is more nuanced than just a home or neighbourhood. It’s also about personal and cultural values, priorities and connections to people and places. It is layered with social, material and symbolic meaning. And it’s about having choices about where and how to age. 

Janine Wiles and Tara Coleman found that older people valued highly the ability to have choices about their living arrangements and access to services. Familiarity and connections brought a sense of belonging and security. 

Meaning of home

Housing is basically an infrastructure concept whereas home is where personal routines and interactions take place. This is what brings meaning. This is why we become attached to places. Wiles and Coleman found that this sense of attachment has positive functional, physical and mental health outcomes all contributing to wellbeing. 

Home maintenance

The ability to carry out maintenance tasks contributes to attachment. However, when these tasks become difficult, either through ability or financial constraints, the sense of home is disrupted. Homes in disrepair are not only hazardous but lessen the attachment to the home. 

‘Home and aging’ by Wiles and Coleman is a chapter in Handbook on Aging and Place. Editors are Malcolm Cutchin and Graham D Rowles. It is available for purchase from ElgarOnline. 

Chapter Introduction

Home is a concept both underpinning and animated by ideas about ‘aging in place’ and experiences of place and aging. Home is an important resource during older age. At a time when people typically face changes and challenges, having a secure sense of home and strong attachment to place can give a sense of agency, autonomy, and resilience. A sense of home is intricately entwined with our preferred sense of who we are, and with how we build and sustain relationships with others and with places. Conversely, disruption to the sense of home can create instability and accentuate the feeling of being ‘at the end of life’ or of vulnerability and fragility.

Mandatory vs non-mandatory

Is there such a thing as non-mandatory when it comes to the Disability Discrimination Act? Access consultant Bryce Tolliday writes a thoughtful piece in Access Insight on this topic. He bemoans the way building certifiers, designers and others who request design changes. This is because, they believe the consultant’s design advice is non-mandatory. They just think it is “nice to have”. However, in the mandatory vs non-mandatory debate, it’s the Disability Discrimination Act (DDA) they should be thinking about.

There is a misunderstanding of the laws affecting new building work as well as the value a good access consultant can bring to the project.

Front page of the Access to Premises Standard.

A mandatory requirement is something you must to do and is non-negotiable. Tolliday argues that it’s not possible to have a non-mandatory outcome under the DDA. That’s because the objects of the law are to eliminate, as far as possible, discrimination on the grounds of disability.

Which law comes first?

It’s the mix of different laws, standards and regulations that confuse people. Some are enacted at a federal level and some are enacted by states and territories. Federal laws always trump state and territory laws.

People who want to press the non-mandatory argument rely on the NCC being the primary building regulation in Australia. But this is not the case. Each state and territory has to adopt the NCC elements into their respective building codes. Consequently, the Commonwealth law, the DDA together withe Disability Standards, becomes the law to follow.

The problem for designers and certifiers is that the DDA does not specify design standards or outcomes in the same way as the NCC. How can one know whether a design feature will discriminate or disadvantage a person with disability? Tolliday’s response is:

If they cannot provide an evidence-based reason demonstrating that disadvantage will not occur then what the access consultant is proposing is a mandatory requirement under the DDA.

A screenshot of part of the Australian Human Rights Commission's overview of disability discrimination.

The outcomes expected by the DDA are not covered by Australian Standards related to disability access. This is due to the minimal requirements of the Standards that do not cover the full diversity of disability.

Case study confirms what’s mandatory

In the case of Ryan v the Sunshine Coast Hospital and Health Service the mandatory requirements went beyond the NCC, the Premises Standards and AS1428. The late Peter Ryan who was blind brought the action. He argued he was disadvantaged by the design of the Hospital. Shorelines, glare, and luminance contrast were not covered by the NCC but covered by other design guidelines and international standards. Tactile and braille signage for the entire hospital was not covered by the NCC or AS1428 either.

Ryan frequently got lost when he visited as an outpatient. He posthumously won the case and it will cost the Hospital millions to address the 17 breaches of the design.

External view of Sunshine Coast University Hospital.

The Judge found Peter Ryan and been indirectly discriminated against. The Hospital had not considered key features that could impact patients who were blind or had low vision.

The key issue for Tolliday is that the Australian Building Codes Board, which looks after the NCC, has said it will not regulate internal fitouts. Office buildings, for example, are not fitted out at completion, so that is reasonable. However, schools, hotels and hospitals are fitted out at completion.

The title of Bryce Tolliday’s article is Mandatory vs Non-Mandatory published in Access Insight.

Information in an emergency

Getting information in an emergency can mean the different between life and death. Or at least the difference between feeling helpless and knowing what to do. But communication is a complex process and not everyone responds to the same methods. So what is accessible information? It’s information provided in different formats.

Easy Read and Easy English use pictures as well as words. These are good for the 44% of the population with a low level of literacy. Targeting this group means people with higher levels of literacy can also get the message. It’s universal design.

A blackboard with words: learn, language, adjectives, nouns, verbs, adverbs written in chalk

Other formats are braille and Auslan, and captioning for videos. The Disability Discrimination Act lists places and services that must not discriminate, but there is nothing specific about information methods. This is something that needs to be made clearer in the legislation. However, the Commonwealth and state governments have policies to cover the provision of information.

Accessible emergency and crisis information

Researchers found four things to improve crisis information.

  1. Accessible information providers, such as Easy Read professionals, are not experts in the subject at hand. They need support from experts such as doctors or police.
Black and white logo for easy read, has a tick and a open book

2. Accessible information providers need to stay up to date with changing details. Having one direct source is the best way to manage this.

3. Making high quality accessible information takes time and skill. It’s essential to have the capacity and capability ready to act – don’t wait for the crisis to happen.

4. Agencies need to be upskilled. Sometimes crisis information needs to be available immediately such as an evacuation order. Emergency services need more baseline skills to make this information themselves.

The title of the article from The Conversation is, Crisis communication saves lives – but people with disability often aren’t given the message. The call for action is to have accessible crisis information included in a new Disability Rights Act.

Four men with orange lifejackets are standing in a yellow State Emergency Service boat on a swollen river.

Media organisations, businesses and services need to get on board too. The more people who produce accessible information, the better.

War time crisis communication

A Masters thesis on crisis communication for older people in a war-related scenario uses personas as a means of highlighting the issues. Knowing where the meeting points are at a time of crisis are essential, but how best to communicate these. Information channels need to go beyond the Internet and be easily understood. Planning for a crisis from an older person’s perspective automatically includes all ages.

This thesis explains in detail the process used to suggest changes needed for older people to be accommodated in crisis planning.

A poster with a tank and soldier in the background and an atomic bomb mushroom cloud in the foreground. The text reads, War Bunkers! Swedish Emergency Shelters. How to find your nearest shelter.

The title of the thesis is, Crisis communication for elderly: Designing information channels ensuring elderly access to shelters and meeting points in a war-related scenario. The translation from Swedish is not smooth but the points are clear. Note that the use of the word “elderly” is not preferred in Australia, but translations often default to this.

From the abstract

Crisis preparedness has become a greater focus in Sweden since the Russian invasion of Ukraine in spring 2022. Therefore, information at a national level is required to ensure safety.. However, there is a risk that older people could have difficulties understanding information provided.

The Internet is often used as an information channel, but not everyone can access this. This study investigated different crisis communication channels in Sweden and how they can be tailored for older people. Shelters and meeting points also need to be designed to include older people.

Observations of shelters in Gothenburg and interviews with municipalities were carried out. To guide authorities for future development of crisis information a combination of guidelines,
personas and concept proposals are suggested. The concepts proposed are a physical shelter map that can be printed directly from the shelter map MSB (Swedish civil contingency agency).

Proposed concepts for meeting points are a brochure with information about the
meeting points that each municipality will offer their citizens. Proposed solution for prioritising the elderly at a meeting point is also suggested with a queuing system and an “area for elderly”.

To understand the concepts and feelings involved, storytelling for both proposals was developed explaining the user journey. This project can be used for further exploration of concepts proposals and development of crisis communication channels and planning for meeting points.

Defensive architecture, hostile design

Bleacher seating along the river front is covered with different coloured bean bags.Design can have a dark side, often as a result of unintended consequences. This can happen when designers have just one group of people in mind, or when good design ideas are changed at the last moment. The Fifth Estate article about the Howard Smith Wharves in Brisbane illustrates how good design can morph into bad design.

The wharf development was supposed to be a vibrant playground for ‘lovers of the good life’. The development included restaurants and an active transport corridor along the river. The path required separation with line markings, but all this changed just before opening.

A gravel path was installed with the idea that this would be a “go slow” zone. Of course the community objected. A key city thoroughfare was disrupted and the gravel reduced accessibility. And new safety hazards arose because of no line markings. Who then were the ‘lovers of the good life’? Image above from Facebook. 

The title of the article is, Urban design has a dark side to it’s creativity – two projects in Brisbane show how. Somehow, the Planning Institute of Australia thought this was worthy of an urban design award. 

Defensive architecture – hostile design

A concrete bench with spike barriers to prevent people from sleeping and even sitting.Design is powerful. It can include or exclude. While many designers are doing their best to be inclusive, others are deliberately creating hostile designs. Why do this? It’s under the heading of “defensive architecture” – ways to prevent crime. But should this be solved with design – it’s the opposite of universal design.

An article from UNSW begins, “Spike, bars and barricades are not typically things you would associate with a park. But it turns out they are part of a growing suite of hostile design interventions in public spaces.”

Creating urban discomfort

Spikes are embedded in flat surfaces underneath bridges to deter rough sleepers. Seats and flat surfaces made too uncomfortable to sit on for any length of time. Flat surfaces act as seating for those tired legs. Meanwhile, it goes against all the principles of universal design and encouraging people to get out and about.

The article is titled, Defensive architecture: design at its most hostile. It has examples and pictures and discusses the issues of designing to exclude. 

There is a similar article in The Guardian, Anti-homeless spikes: ‘Sleeping rough opened my eyes to the city’s barbed cruelty‘. 

Image courtesy UNSW newsroom.

What good is design if not for everyone?

Johan Carey in jeans and black polo shirt is on the stage at a Ted Talk on what good is design if it's not for everyone.“I believe design functions like the soundtrack that we are not fully aware we are playing. It sends subconscious messages about how to feel and what to expect” says John Carey in his Ted Talk. So what good is design if it’s not for everyone?

John Carey calls fellow architects to create places and spaces for people other than themselves – who, for the most part are white males. “Dignity is to design is what justice is to law and health is to medicine”. “The design reflects back to you your value”. “If good design is only for a privileged few, what good is it?” “Good design shapes our idea of who we are in the world and what we deserve.”

Unlike law and medicine, architecture has failed to attract and sustain women and people of colour. This is a passionate talk that does not mention accessibility specifically, but is a call to consider everyone in designs. Check it out.

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.”