Many studies use research methods that are not designed to enable everyone to participate. This means only some people get heard and for others, researchers aren’t hearing them. Whether it’s academic research or a workplace survey researchers could be missing out on valuable information. Cathy Basterfield makes this point in her short article on who gets heard in research methods .
Co-design processes are another form of research – action research. But will that process include people with intellectual, physical and sensory conditions? If there is a reading component, will everyone be able to read and interpret written information?
Basterfield lists some common problems with surveys: use of difficult vocabulary, imprecise response options, and ableist language or concepts.
People who need Easy English find it confusing to be asked to read a statement and rate their agreement on a scale. They prefer to be asked a direct question.
Expecting every person to have the ability to access websites is another barrier. 25% of Australian adults are digitally excluded according to Basterfield. Some only have a phone and completing surveys requiring text is difficult at the best of times. Basterfield’s tips to help make sure everyone can understand your information:
add prefaces to increase precision or explain context
All the universally designed places, spaces, and services are of no use if a person cannot access them due to lack of the assistive technology they need. On the other hand, a wheelchair, for example, is of little use without level access in the built environment. Together, assistive technology and universal design form the disability inclusion continuum. Both are needed but are rarely discussed together.
Together, assistive technology (AT) and home modifications are essential for independent living. But access to the funding schemes is somewhat haphazard, especially for the majority of people who are not NDIS participants. The cost of AT and home modifications is the cited as the reason for letting the status quo remain. But who is really paying for NOT funding AT for the people who need these devices? Until now, there has been little research on this issue.
A team at Monash University set up a study to identify the many AT and home modification schemes in Australia. They also conducted an economic analysis of the data they collected to form policy recommendations. The fact that there are 88 government funders administering 109 schemes tells us there is a problem here. Difficulties obtaining data from these schemes confounds the issues further.
The NDIS, and the misplaced assumption that it will cover everyone with a disability, has caused greater inequity in the provision of AT. It now makes the matter more urgent.
The most obvious recommendation is to take a whole of government approach to tackle the inequity of access to AT and home modifications. The second, is to devise a way of capturing data for more informed decision making. Data are essential for measuring needs and outcomes. The third recommendation is to co-design – a universal design concept – with stakeholders.
Governments cannot expect to achieve significant change within Australia’s new Disability Strategy unless people with disability have access to AT and HM they need. The current study offers new evidence to inform government responses to realise the potential of AT and HM through public policy reform.
Assistive technology was peviously known as “aids and equipment for people with disability”. That’s because it is not mainstream equipment such as a pair of scissors, or a bicycle. Anyone requiring assistive technology requires a prescription by a health professional to access a funding scheme. The same goes for anyone requiring a home modification so they can live safely at home.
Australians with disability have inequitable access to assistive technology (AT) and home modifications (HM). This is inconsistent with human rights obligations and fails to capitalise on internationally recognised potential return on investment.
This study quantifies the public provision of AT and HM in Australia by identifying all publicly funded schemes and comparing data on the spend per person.
An environmental scan and data survey identified 88 government funders administering 109 schemes. Data were available for 1/3 of schemes. Economic evaluation of available cost and participant data estimated the annual AT/HM spend per person per scheme.
Data demonstrated significant AT/HM spend variability across schemes. Modelled costs are presented for a $16 billion national scheme where all Australians with disability are funded NDIS-equivalent. There are substantial service provision gaps and an urgent need for change in disability policy. A cost model and policy principles are proposed to achieve economies of scale and equity in the provision of AT and HM.
The Victoria’s Autism Plan builds on their Absolutely everyone: state disability plan. It incorporates commitments to remove specific barriers faced by people in the autistic community. The plan is based on feedback from a parliamentary inquiry into the needs of autistic people and their families. Building helpful attitudes toward autistic people is a key element of Victoria’s Autism Plan.
The document begins with personal stories, which is pleasing to see because they are more revealing than statistics or diagnoses. It sets the tone for the rest of the document and acknowledges additional barriers faced by the autistic community.
A note on language
The term Autism Spectrum Disorder (ASD) is no longer the preferred term. Language is influential in changing community attitudes so choosing the right terms is important. Individuals and advocacy bodies were asked which term they thought should be used in the plan. There was general agreement that the term “autistic people” should be used. An important point – ask people what terms they prefer.
Key points in the plan
The parliamentary inquiry found that autistic people experience social isolation, and difficulty accessing health and other public services. Specific barriers included:
lack of community understanding
accessing education that meets their needs
exclusion from employment opportunities
limited access to supports and services
additional barriers to inclusion for autistic people with intersecting identities
The commitments in this plan relate to the key areas in the state disability plan: inclusive communities; health housing and wellbeing; fairness and safety; and contributing lives. The plan has more detail on each commitment and useful case studies illustrate success stories.
Although there is greater community awareness of autism, community attitudes remain the biggest barrier to inclusion in social and economic life. Many autistic people avoid environmental barriers such as crowds, noise and light levels. Worrying how people will treat them or respond to them adds to social isolation.
We know public libraries have books and magazines, but they are often a major focal point in a community as well. But not everyone can take advantage of the many and varied library resources, and it’s not just about being able to read. Getting to and around a library and being made welcome will encourage more people to take advantage of their local library. So what actions can library staff take to make inclusive and accessible libraries?
Malmo City libraries in Sweden developed a guide to accessibility for their staff. It’s titled, ALibrary Without Obstacles: A Guide to Accessibility. The guide is easy to read and follow and is useful for any information service, not just libraries. It’s translated to English and consequently, some terms are specifically Swedish.
Libraries in Sweden must be accessible to all and provide an equal opportunity to enjoy literature and knowledge. Their basic premise is whatever is necessary for some is good for everyone. This premise holds for all information services. Image is the front cover of the guide.
What do libraries offer besides books?
Libraries across the globe arrange events throughout the year including school holidays. Many offer community information services, and librarians have skills in finding information when looking for something in particular. Events must be as accessible as possible and visitors like to know the level of access they can expect. The guide lists some minimum requirements. The way information is presented is also important.
“We write so everyone can understand. Plain language means using words that are easy to understand in a clear and simple structure. Use everyday language, write short sentences, and begin with the most important information.” Image is from the guide.
Reading without obstacles
Most libraries offer adapted media such as talking books, large print and easy to read books. Getting to the library and finding your way around is key for people with physical disabilities. The aim of an inclusive and accessible library is that everyone should be able to reach their next book.
While this guide is for public library staff, the content is applicable to other institutions and services that provide public information. An excellent resource with many of the actions easy to achieve.
Almost everyone finds themselves in hospital at some time whether as a patient or a visitor. Consequently, we are talking about the whole of our diverse population. But how well is diversity, equity and inclusion considered in healthcare practice? If the statistics are anything to go by, we are not doing well. Marginalised groups experience poorer health outcomes. The conditions in which people live – referred to as the “social determinants of health” – are the main reason for this.
Thirteen people were involved in devising 12 Tips for Inclusive Practice in Healthcare Settings.
Appropriate terminology is a major feature in the list of 12 tips. Non-judgmental factual terms are preferred. Labels such as “obese” or “schizophrenic” can imply blame or non-compliance. And some patients will want to use non-binary gender terms when referring to themselves. Using the person’s preferred terms is recommended in all situations as these can vary. For example some people say they are autistic and others will say they have autism. Then there are people with multiple identities (intersectionality).
The 12 Tips for Inclusive Practice
Here is a brief outline of the the 12 tips.
Tip 1: Beware of assumptions and stereotypes: An individual might have multiple diverse characteristics. In the absence of early information it is easy to assume some things by default. A wheelchair user might conjure up assumptions about the health and ability to make decisions. A person accompanying a patient may be assumed to be a partner or family member.
Tip 2: Replace labels with appropriate terminology: The main point here is to keep up to date with best-practice terminology. For example, guidelines for preferred language for First Nations people is shifting and evolving. Some terms considered derogatory are now embraced by some (queer, autistic).
Tip 3: Use inclusive language: words can exclude and “other” people when they deemed to be different to oneself.
Tip 4: Ensure inclusive physical spaces: Accommodating physical, sensory and cognitive needs improves patient experience. Inclusive design goes beyond legislated minimum access requirements for buildings. For example gowns, furniture, and blood pressure cuffs, should accommodate all sizes.
Tip 5: Inclusive signage and symbols: A rainbow flag or First Nations flag will make people feel welcome. However, the use of these signs needs to be accompanied by inclusive care to avoid disappointment.
Tip 6: Appropriate communication methods: This is where body language and auditory input come into play. Not everyone processes these cues well and sometimes information is better put in writing.
Tip 7: Adopt a Strengths-Based Approach: This approach avoids stereotyping and acknowledges patients’ capacity for resilience and builds on their strengths.
Tips 8 – 12 focus on the health system and healthcare delivery and encourages health workers to advocate for improvements.
This paper outlines practical tips for inclusive healthcare practice and service delivery, covering diversity aspects and intersectionality. A team with wide-ranging lived experiences from a national public health association’s diversity, equity, and inclusion group compiled the tips, which were reiteratively discussed and refined. The final twelve tips were selected for practical and broad applicability.
The twelve chosen tips are: (a) beware of assumptions and stereotypes, (b) replace labels with appropriate terminology, (c) use inclusive language, (d) ensure inclusivity in physical space, (e) use inclusive signage, (f) ensure appropriate communication methods, (g) adopt a strength-based approach, (h) ensure inclusivity in research, (i) expand the scope of inclusive healthcare delivery, (j) advocate for inclusivity, (k) self-educate on diversity in all its forms, and (l) build individual and institutional commitments.
The twelve tips are applicable across many aspects of diversity. They provide a practical guide for all healthcare workers and students to improve practices. These tips guide healthcare facilities and workers in improving patient-centered care, especially for those who are often overlooked in mainstream service provision.
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 how other marginalised groups can be included. 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.
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:
Illness (physical or mental)
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.
Care is both a need and a service, but it is also a social value that helps qualify how services, assistance, and support are provided. The value of care aims to keep people feeling safe and maintains their dignity. And caring cities are inclusive cities. A policy paper for the World Summit of Local and Regional Leaders at local government level proposes some thoughts on this.
A city that cares fulfils its human rights obligations as well as the needs and aspirations of everyone. Places and spaces should be available, acceptable, accessible, and affordable for everyone. This means city and community ecosystems need a new social contract to be caring. This contract should involve collaboration and be based on respect for people and the environment.
The policy paperdiscusses the challenges and sets some recommendations for local and regional governments and some points on taking local action. This paper will be of interest to policy makers in all levels of government.
Enabling Environments for Local Action
“The responsibility for caring extends across all of government. Local and regional governments need to be supported and enabled to make the necessary transformations in favour of caring systems. To this end, this paper recommends taking the following actions at the national level:
a. Enact adequate, inclusive regulatory and policy frameworks establishing the basis for green, sustainable, and accessible public services and infrastructure
b. Sustain adequate transfer and allocation of financial resources to strengthen local-level technical capacity and enable efficient implementation.
c. Establish the legal foundations to institutionalize meaningful participatory and multi-level governance that considers the whole of society, moving past political alliances and promoting government accountability at all levels.”
Joint way forward
Governments at all levels need to share responsibility for creating caring systems by collaborating with communities. The policy paper recommends establishing strong partnerships and collaboration to enable social change. Here are some of the key points:
Care is a human right and a public good and universal access to it
Establishing collaborative platforms and social dialogue
Challenging the gendered division of labour of paid and unpaid care work
Respect for local and indigenous knowledge
Accessible and ethical information management
The title of the policy paper is Caring Systems and was presented at the UCLG World Congress and Summit of World Leaders held October 2022 in Korea.
Universal design is a design thinking process so a universal design standard is a contradiction in terms. Standards are fixed where universal design is a continuous improvement process. However, where designers cannot grasp the concept of an inclusive thinking process, a set of design directions is needed. Hence a new European universal design standard for products, goods and services.
The standard sets out requirements and recommendations for extending the customer base for products and services. It’s for organisations that design and manufacture products and/or provide services. The aim is to ensure products and services are available to the widest range of users possible.
Diverse user needs, characteristics, capabilities and preferences area all covered. It is based on processes of user involvement and building on accessibility knowledge. The standard can also be used for complying with legislation and to advance corporate social responsibility.
The standard was developed by Ireland’s National Disability Authority that houses the Centre for Excellence in Universal Design. The document has the title “design for all” which is a recognised European term, but notes that universal design, barrier-free-design and transgenerational design are the same thing.
There is a media release explaining a little more. The regular complaint about standards is the cost of purchase and could be a reason why they are ignored.
Learning about standards
It is assumed that students in design disciplines, such as engineering, automatically learn about standards and how they are developed. According to an article by Jenny Darzentas this is not the case. The way standards are developed and written makes them difficult to understand and apply. Too much emphasis is placed on “learning on the job”.
Darzentas says that education about standards in universal design courses would be beneficial. In Japan, Korea and China this is included, but not in Europe and North America.
Access to standards documents is not usually discussed as a barrier to accessibility and universal design. However, people not only need easy access the documents, but also the information should be easy to access. Is this an argument for standards to follow the concepts of universal design?
Standardisation education is rarely taught to students in the design disciplines in academic settings, and consequently there is not much evidence about best practices. This paper examines this situation, and elaborates on some of the possible reasons for this situation. Further, it gives an example of how students may be instructed and encouraged to further their interests in standards and the standardization-making process as a means for increasing Universal Design in practice.
The Centre for Excellence in Universal Design in Ireland has a comprehensive list that covers all the myths and misinformation about the purpose of universal design. Briefly, the 10 things to know about universal design are:
Universal design strives to improve the original design concept by making it more inclusive
Universally designed products can have a high aesthetic value
Universal design is much more than just a new design trend
Universal design does not aim to replace the design of products targeted at specific markets
Universal design is not another name for compliance with accessible design standards
Universal design benefits more people than older people and people with disabilities
Universal design can be undertaken by any designer, not just specialists
Universal design should be integrated throughout the design process
Universal design is not just about ‘one size fits all’
A universally designed product is the goal: universal design is the process
Editor’s comment: the CEUD website is looking a little dated, but the content remains valid and is good for newcomers to the topic. There are several guidelines for practitioners too. See more detail about these 10 things and other resources on the Centre for Excellence in Universal Designwebsite. There are more explanations in the What is Universal Designsection of this website.
3rd Generation universal design
One of the conundrums of the quest for inclusion, is that individuals have to identify as excluded so that they can get included. That’s because the people already included are doing the including by deciding whether to invite you in. What if inclusion was thought about as “nonclusion”? This is the proposition in a paper on 3rd generation universal design.
“Nonclusive design means design that resists categorisations of bodies/roles and that does not come with predefined or presupposed limits in terms of who it is meant for.
The authors say that “nonclusive design” is an essential element in the shift towards 3rd generation universal design. They define nonclusive design as a design that resists categorisations of bodies and roles. It does not come with with predetermined limits of who it is meant for. Therefore designs incorporate human diversity without reference to existing or traditional ways of doing things.
Nonclusive design is about intersectional thinking focused on unity rather than separation.
The title of the paper is, Towards 3rd Generation Universal Design: Exploring Nonclusive Design. Universal design is more than 50 years old. The first generation began with wheelchair users and the public built environment. The second generation brought additional excluded groups into focus. But the real aim of universal design is to have no excluded groups at all – the 3rd generation concept.
Not yet for everyone
The authors argue that while universal design is for everyone, thinking largely remains in the first generation of universal design. By creating a new word, nonclusion, they hope it takes thinking to a place with difference is a fundamental element of being human.
Creating a new word might help, but regardless, we are still thinking about a future that is yet to exist.
If we have nonclusive design, will a change of name from universal design change existing mindsets?
The issue is also discussed in a 2009 paper,Turning Back Time for Inclusion for Today as Well as Tomorrow. Inclusion is problematic because it requires those who are already included to invite excluded people into the group. Semantics can be important. What we need is inclusiveness – that’s where inclusion has already happened and there are no exclusions. Inclusion is a futuristic concept because it is something we are striving for. If we were inclusive, no discussion would be needed.
From the abstract
In this paper, we identify and describe early signs of a shift towards 3rd generation UD, of which “nonclusive design” is an essential part. Nonclusive design means design that resists categorisations of bodies/roles and that does not come with predefined or presupposed limits in terms of who it is meant for.
We outline seven themes characterising the shift towards nonclusive design:
from included to undefined users
from person to function
from adaptism to variation
from sparation to convergence
from reactive to proactive
from unaware to aware
from explicit to tacit
Nonclusive design directs attention to context instead of the individual, focusing on possibilities, functions and facilities. It highlights variation and unity rather than separation.
Nonclusive design presupposes awareness, knowledge and proactive development void of adaptism. It incorporates human variation without reiterating patterns of norm-deviation.
We argue that the continued growth of universal design demands, is part of, and contributes to a shift in culture, with nonclusive, intersectional thinking as a key future driver. In such a culture, 3rd generation universal design can contribute as a common guiding mindset, as a source for innovation, as a way to listen for diversity
Images created for the conference presentation, Turning Back Time for Today as well as Tomorrow.
Toilet signage and nonclusion
A further paper by the same research group discusses three versions of toilet signage in more detail than the paper above. The purpose is to find a way to be inclusive without depicting exceptions.
Addition – adding more pictograms of different persons
Combination – using composite pictograms
Nonclusion – not depicting persons, bodies or roles at all.
“Diversity is being asked to the party; inclusion is being asked to dance.” This is a great quote from Verna Myers. She is referring to the workplace and the employment and advancement of women and people of colour. It is relevant to all other groups because diversity and inclusion are both part of the movement for more inclusive and equitable societies.
The Harvard Business Review discusses this issue in Diversity doesn’t stick without inclusion. It is one thing to have a diverse population, but that doesn’t mean equity or inclusion will automatically follow. Diversity and inclusion are often lumped together in the employment context. They are assumed to be the same thing. But this is not the case.
In the workplace, diversity equals representation. Attracting diverse talent requires full participation to foster innovation and growth. This is inclusion. Getting diverse talent is one thing, including them fully is another.
Diversity & Inclusion: Start Here
The Commons Social Change Library is about social change and driving social movements in Australia. While the context of their guide is about driving social change, most of the information is applicable in any situation.
The Diversity & Inclusion: Start Here guide introduces key concepts and links to other resources. The key point is that inclusion is a social change movement and we can all do our part by including marginalised people in our ranks. That’s whether it’s the workforce, our local sporting team or our social change campaigns.
There are many more resources on this website – you don’t need to be a campaigner to benefit from them.
The Commons Social Change Library is a not for profit organisation committed to educating for community action. They collect, curate and distribute the key lessons and resources of progressive movements around Australia and across the globe.
Editor’s note: I co-wrote a paper on inclusionbeing something where you have to wait for the “mainstream” group to invite you in. Inclusiveness is something that is present, it is happening now. You can see the slideshow version too which has some explanatory graphics.