Academics talk about “vulnerable groups” based on ethics approval language. But what they mean is, people who have difficulty participating because they have a disability, illness, or some other condition. Indeed, some ethics requirements are so protective of “vulnerable groups” that they make it difficult to include them from research projects. Consequently their voices are silenced. So how do we include them in co-design and when?While co-design is the new buzz word, participatory design has been around in academia for many years. Involving communities in decision-making is now recognised as being responsive to community needs. That means going beyond a one-size-fits-all approach to design.
Participatory design
Participatory design, or co-design, is about genuine inclusion. That is, not just informing the design, but being participants in the design process. However, involving people with complex needs poses some challenges. It’s easy to make assumptions about their capacity to participate and collaborate. However, this comes down to the way the participation process is designed. Participatory design and the inclusion of vulnerable groups is the topic of an article from Finland. They use three projects to compare how participatory design might work best. The first explored co-design activities with people with intellectual disabilities living in supported housing. The second focused on culturally diverse young people experiencing crisis situations. The third dealt with nursing students with learning disabilities adapting to work in the health sector.
Challenges and power dynamics
The article covers the challenges, the power dynamics and their methodology. Each of the three projects is documented in detail. The findings show some similarities between the projects, but when it came to users, there were different outcomes and processes. Participatory design became more challenging when there were more pronounced differences in power dynamics.These three projects provide good information for involving vulnerable groups in participatory design processes. Questions of equality and genuine inclusion is about both the design activities and how the entire project is planned. The title of the article is, Whom do we include and when? participatory design with vulnerable groups
From the abstract
This article makes three contributions to participatory design (PD) research and practice with vulnerable groups:
A framework for understanding stakeholder engagement over the course of a PD project.
Approaches to making user engagement and PD activities more inclusive.
An analysis of how the design and power dynamics of PD projects affect vulnerable groups’ participation.
A map of engagement evaluates stakeholder involvement from initial problem definition to design outcome. The first looks at codesign activities to support decision-making in the context of intellectual disabilities. The second looks at culturally diverse youth navigating crisis without adequate assistance from public services. The third examines nursing students adapting to work in the health sector without accommodations for learning disabilities.Comparing the projects reveals patterns in project planning and execution, and in stakeholder relationships. The article analyses how users are defined, engaged and supported in PD; how proxies shape vulnerable groups’ involvement and PD projects as a whole; and opportunities for greater inclusion when the entire PD project is taken into account.
What does co-design mean? How does it work?
The term co-design is being used more frequently, but what does co-design mean and how does it work? Well, that depends on the context. It could mean a design group working together. Nothing difficult about that concept. Or it could mean involving end users in the design process. This is where it gets more tricky and more questions arise.At what point do you involve users? Which users do you involve? Will the users have the required knowledge and experience to contribute constructively? Will designers have the skills to be inclusive and listen to users? Participatory action research incorporates both designer and user learning. But these projects are necessarily long and usually have research funding attached. However, they usually produce knowledge and results useful in other settings. A related concept is co-design in quality improvement, for example, in a hospital setting. Both staff and patients have a role to play in advancing quality improvement. Differing levels of understanding between staff and patients can lead to tokenism. So how can we equalise knowledge so that everyone’s contribution is constructive? A research team in a Brisbane hospital grappled with this issue. Their research reportis written in academic language and not easy to read. Nevertheless, they conclude that effective patient-staff partnerships require specific skills. Briefly, it means adapting to change, and generating new knowledge for continuous improvement.
A framework
The researches developed a framework that includes ten capabilities under three key headings.
Personal attributes:
Dedicated to improving healthcare
Self-aware and reflective
Confident and flexible
2. Relationships and communication attributes:
Working and learning as a team
Collaborating and communicating
Advocating for everyone
3. Philosophies/Models:
Organisational systems & policy
Patient and public involvement best practice
Quality improvement principles.
These nine points are connected with the overarching theme of sharing power and leadership.Title of the article is, “Co-produced capability framework for successful patient and staff partnerships in healthcare quality improvement: results of a scoping review”.Other posts on co-design include The right to participate and co-design, and Co-design is another skill set.
This site has a web accessibility overlay or add-in widget. It’s the circle icon next to our logo on the website. If you click on it, it has a dropdown accessibility toolbar. That’s because the platform, WordPress, isn’t inherently accessible. So like the tacked on ramp to a building, it is an afterthought. But really, it advertises that the website platform isn’t really accessible and there are good reasons why.
Website add-ons for accessibility go back to the 1990s with products like Browsealoud and Readspeaker. They added text to speech capabilities on the website. More products arrived in the market with similar aims. To the layperson these features seem beneficial, but their practical value is overstated. That’s because the people who need these features will already have the software on their devices to access the web and other software. The Overlay Fact Sheet by Karl Groves explains more:
From the overlay fact sheet
“It is a mistake to believe that the features provided by the overlay widget will be of much use by end users because if those features were necessary to use the website, they’d be needed for all websites that the user interacts with. Instead, the widget is —at best—redundant functionality with what the user already has.”
Do overlays meet compliance?
While an overlay might improve compliance in some respects, full compliance cannot be achieved using this method. That’s because the products are unable to “repair” all possible issues. In some cases, the overlay can conflict with the users software and cause problems. And ironically, some overlays are inaccessible. So that means it’s back to the programmer and designer to get it right.
The video below gives examples of overlays and graphically shows how they don’t work. You only need to look at the first three minutes to get the idea.
We all have a responsibility to make our digital information accessible. Beware any web developer who says they’ve solved the accessibility problem with an overlay or widget. Indeed, you are showing your inaccessibility by having an “accessibility” overlay and icon on your site.
Web designers might think the international web standards are sufficient. But they are not – just like the standards for access and mobility in the public domain are not enough.
By the way, CUDA uses the WordPress platform’s free version and continues to do so because we do not receive financial support for the website and want to keep it open access. As with everything universal design – it is a work in progress. “Do the best you can with what you have at the time and strive to improve next time.”
Planning inclusive communities begins with asking the right questions. For example: What makes an inclusive community? What stops communities being inclusive? When we say community, what do we mean? And what does inclusive mean?Lisa Stafford’s research project sought to answer those questions and more. Her research heard from 97 people aged from 9 to 92 years. Some had a disability or long term health condition, and others were their family members or allies. The findings are presented in a reader friendly format rather than an academic article. Image from Planning Inclusive Communities website
Findings from Stage 1
The thoughts and experiences from participants with and without disability shared many aspects in common. Here are some of the points in brief.An inclusive community is about people where everyone is valued and belongs. Everyone is valued and respected regardless of their culture or background. That means communities must be planned for all people – built for equity, fairness and accessibility. Inclusive communities are happy places where people have choices and safe spaces to have fun and socialise. So how do we make it happen?The answer is planning together from the very beginning. People with disability, diverse groups, government and urban planning practitioners should all be involved. The Planning Inclusive Communities website explains the project in plain language with lots of graphics. There is also a link to an Easy English explanationof the project. The video below also gives an overview. The title of the full report is What Makes Inclusive Communities? Meanings, Tensions, Change Needed and is downloadable in Word. It gives more detail about the background to the research and the findings. Stage 2 of this research project will identify people who want to help make change and create a plan for inclusive communities.
https://youtu.be/s9LFt8LZ81k
Here is a quote from the website that has more information.
“I feel like it’s all about everyone being able to equally engage in the environment in the community. For people with disabilities there is a lot of restraint and they can’t engage as much as other people. It’s also like equality is not enough, it should be equity so everyone has what they need to be able to engage in that community. Because I feel like a community is about people and engagement, but also being able to access and work around a community.”
Planning Inclusively: Make Communities Just for All
Urban planning is a highly contested and politicised area to work in. The talk is that planning is about people, not roads and buildings. But when do users – people – get a say in planning? Only at the end when plans are put on exhibition. Then you need to be an expert to understand them. Planning inclusively is to make communities just for all. Lisa Stafford, ina briefing paper, asks how well do we consider human diversity in planning cities and regions? Planners and bureaucrats would rarely even consider the concept of “Ableism” in their designs. That’s why we still have marginalisation by design. The lens of the average or the “normal” person is rarely put aside for a lens of diversity. Social planning can drive inclusive communities because it operates from a justice framework. Participatory planning is one way to work towards inclusion. The tile of Lisa Stafford’s paper is, Planning Inclusively: Disrupting ‘Ableism’ to Make Communities Just for All. She has four recommendations at the end of her easy to read paper. Briefly they are:
Adopt an approach of planning for all
Apply spatial justice thinking to planning
Embed universal design as a core planning principle
Re-emphasise the social in planning
Editorial Introduction
“Disabled people continue to experience exclusion by design in our everyday spaces, infrastructure and services, which has been magnified through the COVID-19 pandemic. Now, more than ever, there is an opportunity for urban and regional planning practitioners, researchers and disabled people to come together to advocate for and create inclusive, sustainable communities for all. However, to make this transformative, we must first critically question how well do we really consider human diversity in planning cities, towns and regions? This question is examined in this briefing paper by contesting entrenched challenges like ‘ableism’ before providing fundamental starting points for planners in planning more inclusive and just communities for all.”
On one hand, new mobility technology increases opportunities to improve transport systems. But on the other, the technology is unevenly distributed in terms of access and inclusion. This means many will be left out, especially those with reduced mobility.
The new technology can create unintended barriers: physical, technological, economic and mental – each one a challenge to universal design. Public policy also has a role to play in reducing barriers to mobility.
Norway has a whole of government universal design policy and has done good work in making public transport accessible. However, many advancements require digital skills in using smartphone apps and electronic ticketing. And that’s just one universal design challenge.
Most technological advances in mobility result in better accessibility for many, yet the benefits remain unevenly distributed. New and improved mobility technologies typically result in increased mobility. However, most new technologies create both winners and losers. Who wins and who loses depends on how the mobility solution in question is introduced to the mobility system.
This study finds that many of the new mobility technologies that are introduced, though not directly relating to universal design, strongly affect the universality of access to mobility.
The chapter aims to give insight into how certain new mobility solutions affect different user groups, and to highlight how the outcome is a function of the interplay between technology and its implementation. The paper concludes by pointing to the need for regulation to align the objectives of the actors behind new technologies and an inclusive society.
Automated vehicles: mobility and accessibility
The transportation and mobility sector has a design history focused on infrastructure efficiencies. User perspectives are being introduced in other sectors and it is time for the mobility sector to catch up.
An article from Norway discusses the issues introducing universal design and co-creation. The author uses three vignettes to highlight some of the issues users encounter.
Many people in Europe still have limited access to transportation modes overall. Socio-economic constraints, and cognitive, sensory and physical impairments affect everyday life, posing challenges to accessing mobility services.
Technologies for vehicle automation have advanced in recent decades. Yet, the implementation and use of automated and autonomous vehicles (jointly referred to as AVs) entails chances but also hurdles regarding accessibility and inclusivity of vulnerable groups.
This concerns both the use of the vehicle by humans as well as the interaction between humans and vehicles as participants in road traffic.
In this chapter, we identify opportunities and risks narrow down the vulnerable social groups we are looking at. Subsequently, we present the benefits that co-creation and universal design can have in overcoming or, in the best case, avoiding these obstacles.
Detailed recommendations for action cannot be given within this framework, but suggestions for solutions are outlined.
Law schools teach law and introduce the values that students take into the legal profession. Unless law schools embrace universal design, they will continue to be inequitable and pose barriers to people who might be good lawyers. This is the basis of an article by Matthew Timko where he says the place to introduce universal design is through law libraries.
Timko says the law library is the ideal testing ground for changes that assist student comprehension and testing. Beginning with the library services, the value of universal design will gradually become apparent to all stakeholders. From there it will enter the legal academy, legal education process and legal profession.
Timko uses the 7 Principles of Universal design as the framework for his proposition. This shows how flexibly the principles can be applied. He then discusses the role of disability legislation in the United States and the supports available.
Ethical and professional standards provide another opportunity to support individuals. Timko argues that most accommodations pose menial burdens on institutions but provide great benefit to individuals. However, they need to be provided as a general rule, not just when they are asked for. This is the underlying tenet of universal design for learning.
The article goes into more detail about the role of legislation and how it should apply to law schools. In the conclusion, Timko states:
“Universal design offers the key to not only increased access to legal education and legal knowledge but also a more fundamental shift in the perceptions and thinking that have plagued disability laws and design habits over the last 30 years.”
The types of universal design features discussed can be introduced into the law library gradually and in cost-effective ways.
I was invited to participate in a question and answer interview for the Law Society Journal with Features Editor, Avril Janks. I was encouraged to find that universal design has entered the realms of the legal profession and happy to participate.
We discussed universal design broadly and then how it might be implemented in legal workplaces. Universal design can be applied to the office design, office systems, and employment practice. So plenty of scope for the profession to be more inclusive. If you want to read the article published in the March 2023 edition, contact journal@lawsociety.com.au
Publicly funded home modifications are a regular feature of My Aged Care and the NDIS schemes. NDIS participants seeking independence and desires to age in place are increasing, but our housing stock is not fit for this purpose. Consequently, homes need adaptation as people age or acquire a disability. However, there is a clash of values between what the client wants, what the funder wants, and what the occupational therapist (OT) deems functional. That’s a finding from researchers at the Hopkins Centre.
Our homes are not designed for disability and ageing. Consequently, modifications are essential for remaining safely and independently at home. They are an essential part of the NDIS and My Aged Care schemes.
The chart shows the key overarching themes from the research
Researchers interviewed OTs experienced in prescribing home modifications. They wanted to gauge their experiences in the assessment process. They found that clients (homeowners) value aesthetics and property values. On the other hand, funding bodies value the cheapest option, and OTs are looking for the most functional outcome. OTs are also confronted with different decision making criteria across the various schemes.
Consequently, it is up to the OT to balance the desires of the client with those of the funder using their professional knowledge. Not an easy task, and unlikely to lead to optimum outcomes. And OTs become de facto bureaucrats in this process, which can also be a challenge to their professional values.
But what is “value”?
The research paper discusses the various aspects of value from different perspectives. The best outcomes are achieved when there is open discussion between the client, the funder and the OT. This encourages a better alignment of values.
While this paper is focused on the OT professional, it links closely with the notion of disability and ageing stigma. The idea of having a grab bar or a ramp appears to be an affront to one’s dignity. Older people see this as the beginning of the “downhill run” of life. The new Livable Housing Design Standardwill help minimise this stigma by providing a step free entry and better bathroom design. Until we have sufficient stock, OTs will continue to provide home modification assessments.
There is also a webinar on the Hopkins Centre website that discusses client perspectives of home modifications. In a nutshell, they see modifications as value for money if they meet their specific needs to a high standard. Also, the process of getting a modification has to be straightforward without wasting time and money.
Phillippa Carnemolla’s research showed the number of care hours saved and improved quality of life with appropriate modifications.
Future-proofing is best
For those who can afford to renovate their home now, it is worth considering future-proofing, rather than leaving it “until the time comes”. The Livable Housing Design Guidelines are a good reference for anyone updating their home at any point in their life. This Guideline is the basis of the mandated Livable Housing Design Standard, but has more useful information for homeowners.
The 7 Principles and the 8 Goals of universal design have their roots in the built environment and people with disability. We have moved on since their inception to thinking about including other marginalised groups. With this thinking comes intersectionality where an individual can be a member of more than one of those groups. For example, a female refugee with a disability.
The 8-Inclusion Needs framework sits alongside the classic 7 Principles and the practical 8 Goals of universal design. Together they provide a more holistic view of the real lives of people.
The framework seeks to provide a new perspective for shifting the focus from a list of identities to addressing the needs of all people. As such it provides a guide for inclusive designs and interventions that eliminate discrimination. It also provides another perspective on the amorphous term “diversity”.
The 8-Inclusion Needs of All People framework
The results of the literature review formed the basis of the 8-Inclusion Needs framework. Briefly, they are:
1. Access – Ensuring all people can see and hear, or understand via alternatives, what is being communicated; and physically access or use what is being provided. 2. Space – Ensuring there is a space provided that allows all people to feel, and are, safe to do what they need to do. 3. Opportunity – Ensuring all people are provided opportunity to fulfil their potential. 4. Representation – Ensuring all people can contribute and are equally heard and valued. 5. Allowance – Ensuring allowances are made without judgement to accommodate the specific needs of all people. 6. Language – Ensuring the choice of words or language consider the specific needs of all people. 7. Respect – Ensuring the history, identity, and beliefs of all people are respectfully considered. 8. Support – Ensuring additional support is provided to enable all people to achieve desired outcomes.
Individual identities – a list
Identities included in the analysis of research on the lived-experience of underrepresented identities:
Gender
Race/ethnicity
Socio-economic status/class
Indigenous
LGBTQI+
Disability
Religion
Age
Immigrant
Illness (physical or mental)
Refugee
Veteran
Neurodiversity
The title of the article is, The 8-Inclusion Needs of All People: A proposed Framework to Address Intersectionality in Efforts to Prevent Discrimination. Published in the International Journal of Social Science Research and Review.
From the abstract
This paper begins by highlighting the current state of inclusion, and then reviews research on the application of intersectionality to address discrimination.
The literature review includes an overview of existing models designed to assist the application of intersectionality in reducing discrimination.
An analysis of research was carried out on the discrimination on 13 individual identities and 5 intersectional identities. A new framework called the 8-Inclusion Needs of All People is based on 8 common themes.
The framework is illustrated with recommendations for application in government and policy making, the law, advocacy work, and in organizations. This goal is to provide a useful framework for expediting social justice and equitable outcomes for all people.
Virtual and hybrid conferences have become more popular since the advent of the recent pandemic. But are they accessible and inclusive? A paper from Canada addresses the issues of inclusive online conferences. Using the recent Parks Accessibility Conference as a case study, the authors describe their experiences. As a Canadian event, they also had to consider two languages in their planning. Some people with disability or impairment find online events less stressful than attending in person. They can avoid travel stresses and the regular access barriers. Others who find crowds and noise difficult, tuning in from home is a more comfortable. Consequently, conference planners need to take care to plan for easy access and inclusion. And it should be for every conference, not just conferences with a disability component. However, this is a good place to begin and to learn from first hand experiences. The Parks Accessibility Conference is one such example.
Key strategies
The authors provide a list of their key strategies:
Make visual elements accessible to attendees with vision impairment
Make audio elements accessible to attendees who are Deaf or hard of hearing
Avoid overstimulation for individual who are neurodiverse or with a cognitive condition
Create ways to incorporate multi-sensory experiences remotely
Finding the right virtual conference platform.
The planners worked with presenters to help format and organise their presentations and materials. They hosted a pre-conference session with attendees to explain how to use the various features of the online platform so they knew what to expect. The paper reads like a story, explaining every step along the way so that others might learn from their experience. There are eight recommendations for future conferences based on what they learned. Top of the list is to include people with disability from the beginning.The title of the paper is, Virtual Accessible Bilingual Conference Planning: The Parks Accessibility Conference.
From the Abstract
The objective of this paper is to share how our team planned and delivered a virtual conference that was fully bilingual and accessible to individuals with disabilities.We incorporated closed captions, sign language interpretation, language interpretation (audio), regularly scheduled breaks, and a multi-sensory experience. We describe our approaches to planning the conference, such as including individuals with disabilities in decision-making, selecting virtual conference platforms, captioners, and interpreters, and how we incorporated a multi-sensory experience. The paper also summarizes feedback we received from our attendees using a post-conference evaluation survey and our team’s reflections on positive aspects of the conference and opportunities for improvement. We conclude by providing a set of practical recommendations that we feel may be helpful to others planning virtual accessible bilingual conferences in the future.
This community-based, participatory research study explores how online sessions can be designed to support complex communication access needs. The use of a community-led co-design approach resulted in a deeper understanding of the individual communication accessibility requirements, barriers, and lived experiences of persons who use AAC, within the online meeting context. Participants (‘co-designers’) designed and took part in collaborative design sessions aimed at developing ideas for supporting communication access and inclusion throughout the process of meeting online. Through cross-community collaboration, we co-designed an open-source communication access toolkit for online meetings. The toolkit includes accessibility guidelines with a protocol for holding accessible and inclusive online sessions; suggested accessibility features and plugins for meeting platforms; and a template for a collaborative participant notebook. The design outcomes provide guidance to the general population on how we might ensure that online meetings of all forms are inclusive and accessible for diverse and complex communicators, as we all have a right to communicate with dignity in ways where we understand and are understood.
One area of inclusion and accessibility that often gets forgotten is readability of forms and questionnaires. Academics and marketing professionals regularly use surveys to get information from specific groups of people. Within those groups will be people with varying levels of capability in terms of being able to decipher what’s on the screen or form. And it isn’t all about literacy and reading ability. It’s about the different ways people see and interpret the information. Here are some good tips for making questionnaires more readable from AlexHaagaard in Medium.
Likert Scales
Likert scales aren’t great for screen readers because they often interpret them as tables. But much depends on the design of the survey platform. Even if they are screen-readable, Likert scales can be difficult for people who are neurodiverse. People who are autistic or dyslexic struggle with visual tracking across and between rows. This creates the need to exert more brain power to focus on getting the corresponding check box.
Instead of using a Likert scale, use a series multiple choice questions to capture the same information. Creating page breaks to separate distinct sections of the questionnaire also helps with readability for everyone.
Balancing access conflicts
As is often the case, making something more accessible for one group can create problems for another. So it’s important to identify these early and eliminate or mitigate the barriers.
One solution is to provide optional comment boxes where the participant can choose whether to reply in their own words. People who want to quickly complete the questionnaire can skip this.
Haagaard takes things a step further with a suggestion to provide detailed explanations about terms and concepts at the beginning of each section. However, this is tiresome for screen readers and others might find this overwhelming. Participants can be asked at the beginning of the survey if they would like the key information repeated for each section. Those who say no can have the concise experience.
In summary, Haagaard acknowledges that it is unrealistic to assume that anything can be fully accessible to everyone. That means that there will still be occasions where an alternative means of participating is required. This might be an interview or an email.
The title of the article is Making Your Surveys More Readable. This is the third in a series on cognitively accessible survey design.
The advent of the Americans with Disabilities Act (ADA) prompted museums and galleries to make their premises and exhibits accessible. But is compliance to standards, sufficient to enjoy a museum experience? The answer is probably, no. So museums need to take a universal design approach if the aim is inclusion, not just physical access.
A group of occupational therapists decided to find out the level of accessibility in museums. Was the ADA sufficient, or was a universal design approach required?
Image: Smithsonian Institute
Participants were recruited from state and regional museum associations. Twenty-five museum associations agreed to participate. At the commencement of the survey participants were given information about the differences between the ADA standards and universal design. This was to help respondents identify if they had incorporated universal design principles and ideas into their museums.
Sixty respondents completed the survey and were asked to self-rate their museum’s accessibility on a Likert scale. Overall, they all thought they provided good accessibility, but they also reported things that needed improvement.
The article explains more about the method and questions and the successes and challenges. People with vision impairment were least likely to be accommodated. Another challenge was providing access to and within historical buildings.
The role of staff
The key component for an inclusive and accessible experience is the skills and knowledge of staff. However, few museums offered disability awareness training or consulted with members of the disability community.
Not unexpectedly, the data revealed that respondents did not know the difference between ADA compliance and universal design. They thought ramps and accessible bathrooms were universal design.
Occupational therapists can help
The article concludes with a nod to occupational therapists being in a unique position to help museums overcome challenges. They are also qualified to train museum staff on how to be inclusive in their approach to people with disability. They make a call to action for partnerships between occupational therapists and all museum stakeholders.
Background: This study explores current industry practice and perceptions of accessibility and universal design in a small sample of American museums. Suggestions for how occupational therapists can help museums go above and beyond ADA guidelines are provided.
Method: Data were collected using a 17-item cross-sectional survey. Twenty-five museum associations assisted with recruitment.
Results: Sixty respondents participated in the survey. The key challenges were accommodations for people with vision impairment, and physical barriers in historial buildings. Confusion between ADA standards and universal design was evident in several responses.
Conclusion: The most frequently reported accessibility rating was good. Staff training and community-based partnerships were often overlooked. There is a potential role for occupational therapists to assist museums with staff training, recruiting people with disabilities, and establishing community partnerships.