Until recently it was thought that a diagnosis of dementia meant staying home and being cared for. Those who work in the area of dementia are doing their best to change this view in the general population. But is the design community prepared to embrace people living with dementia? In Breaking Well-Formed Opinions and Mindsets by Designing with People Living with Dementia, researchers report on a range of disruptive design interventions to break the cycle of well-formed opinions and mindsets. Co-designed interventions have resulted in providing ways for people with dementia to continue contributing to society and have fulfilling lives. The abstract explains more.
Abstract: This paper presents ongoing research that highlights how design thinking and acting can contribute significantly to breaking down preconceived ideas about what people living with dementia are capable of doing. The research, undertaken in collaboration with Alzheimer Scotland and other dementia organisations across the UK, has adopted a range of disruptive design interventions to break the cycle of well-formed opinions, strategies, mindsets and ways-of-doing that tend to remain unchallenged in the health and social care of people living with dementia. The research has resulted in a number of co-designed interventions that help change the perception of dementia by showing that people living with dementia can offer much to UK society after diagnosis. Moreover, it is envisaged that the co-designed activities and interventions presented here will help reconnect people recently diagnosed with dementia to help build their self-esteem, identity and dignity and help keep the person with dementia connected to their community, thus delaying the need for formal support and avoid the need for crisis responses. The paper reports on three design interventions where the authors have worked collaboratively with nearly 200 people diagnosed with dementia across the UK in co-design and development activities. The paper concludes with a number of innovative recommendations for researchers when co-designing with people living with dementia.
Cambridge Workshop on Universal Access and Assistive Technology CWUAAT 2018: Breaking Down Barriers pp 251-262
Service design is yet to get on board with universal design according to a Norwegian Masters thesis study by Oda Lintho Bue. Norway leads the way with its overarching policy and commitment in their policy document, Norway Universally Designed by 2025. So it is no surprise to see this study undertaken here. Universal design is not a profession in its own right, but many projects need a UD champion on the team. Committing resources on universal design early in the project will most likely ensure that there will be no need for resources used on redesign later. This point is well made in the thesis. Given that Norway has such a strong stance on UD, it is interesting to note that even Norway is struggling with getting implementation across the board.
High values are placed on statistics and economics. So when it comes to the topic of people with disability questions are asked such as, “So how many people are there with disability anyway?” and “Should we bother about a few people when there are so many other things to think about?” What more could statistics add (or detract) from the inclusion agenda? What kind of statistics might matter most? Who is the subject of such data and how is it collected? Who is best placed to collect such data? And who decides on the questions to be asked?
Deborah Rhodes addresses some of these issues ina thoughtful discussion paper“Monitoring and Evaluation in Disability-Inclusive Development: Ensuring data ABOUT disability-inclusive development contributes TO inclusion”. Elements of this discussion paper provide food for thought for both development projects and policy development here at home in Australia. There are some key questions at the end of the paper that should be asked as there are many unspoken assumptions that all data are good data:
What is the most important purpose for collecting data?
Who is determining the reason for the data collection?
What are other purposes for collecting data (that may or may not need to be prioritised)?
How can we ensure that the data we collect is relevant to the policy, programming and attitudinal changes that people in the specific context seek to achieve?
What information will tell us about the specific changes involved?
Who will actually benefit from the information generated?
What is the opportunity cost associated with data collection, i.e. would funds needed for the survey be better spent on raising awareness or responding to local priorities for inclusion?
Will the data help to raise awareness of the costs of exclusion?
Universal, inclusive, accessible, design-for-all – are they all the same? Some would argue there are some differences, but the goals are very much the same – inclusion of everyone. Different disciplines, different practitioners, and different countries tend to favour one over the others. Academics find this problematic as it makes it difficult to build an international body of research on a topic where terminology can vary so much. Regulations and codes have not helped the cause: Web accessibility standards, Adaptable Housing standard, Access to Premises Standard, and then there is “universal access” which tends to relate to the built environment. Not having an agreed language or terms is discussed in the Journal of Universal Access in the Information Society. The article has a long title: Universal design, inclusive design, accessible design, design for all: different concepts—one goal? On the concept of accessibility—historical, methodological and philosophical aspects. This is a very useful paper to get a grasp of how we have come to this position and where we need to go. You will need institutional access for a free read, or it can be purchased.
Abstract: Accessibility and equal opportunities for all in the digital age have become increasingly important over the last decade. In one form or another, the concept of accessibility is being considered to a greater or smaller extent in most projects that develop interactive systems. However, the concept varies among different professions, cultures and interest groups. Design for all, universal access and inclusive design are all different names of approaches that largely focus on increasing the accessibility of the interactive system for the widest possible range of use. But, in what way do all these concepts differ and what is the underlying philosophy in all of these concepts? This paper aims at investigating the various concepts used for accessibility, its methodological and historical development and some philosophical aspects of the concept. It can be concluded that there is little or no consensus regarding the definition and use of the concept, and consequently, there is a risk of bringing less accessibility to the target audience. Particularly in international standardization the lack of consensus is striking. Based on this discussion, the authors argue for a much more thorough definition of the concept and discuss what effects it may have on measurability, conformance with standards and the overall usability for the widest possible range of target users.
A great resource from COTA Tasmania. Using the World Health Organization’s Age Friendly Cities and Communities framework they have created an online toolkitaimed at local government. Of course, being age friendly, it really means all ages. However, the focus is on an ageing population – Tasmania having the largest proportion of any state. While it is designed with local government in mind, the information about the 8 domains is relevant to a range of disciplines. Elements of the toolkit include some statistics, 10 easy ways and 5 large scale ways to improve your community, digital technology, resources, and how to become a liveable community. It also has a very useful PowerPoint slide show (9MB) with lots of graphics.
Dr David Bonnett writes in an opinion piece for the Design Council, that health professionals need to step up to show the benefits (cost savings) of designing inclusively. He argues that inclusive design contributes to our health and wellbeing, but these benefits don’t get measured. In the UK new buildings, both public infrastructure and private homes, must incorporate basic access features. But older buildings are not under the same regulation. There are costs for refurbishing older buildings, but by now we should be calculating that cost more effectively. Bonnett says, “The considerable cost of improving these will be borne by local authorities who will in turn need to justify the benefits of their proposals to Government and other funding agencies.” He adds, “Design professionals, highways engineers included, are open to influence, and access consultants and others can tell them what to do. But first, health professional must assist in devising a method for demonstrating the benefits of inclusive design in order to make the case. Concerns for health succeeded in a ban on smoking in public building almost overnight. Inclusive design – already fifty years in the making – has got some catching up to do.”
We sometimes hear mention of the cost of bed days for falls, for example, and other conditions that are brought about by poorly designed environments, but as Bonnett says, it is time for the health profession to get on board.
Guideline on Inclusive Disaster Risk Reduction: Early Warning and Accessible Broadcasting. This document was prepared with the Asia Pacific region in mind. But the principles of inclusion and how to implement them in a disaster situation are relevant to any region or country. The Guideline states it, “…is designed to address the lack of appropriate information and practices on inclusive policies and practices on disaster preparedness, accessible early warnings, accessible transportation, and life safety and evacuation of persons with disabilities.” The document was funded by UN ESCAP. The Asia Pacific Broadcasting Union, Asia Disaster Preparedness Center and GAATES collaborated on the document. With an increase in severe weather events across the world, it is important to ensure people with any kind of disability are afforded the same survival chances as anyone else no matter where they live.
Sabrina Fonseca has written a very interesting article, Designing forms for gender diversity and inclusion. The focus is on designing surveys and marketing materials and whether the collection of gender information is really necessary, and if it is, how can you be inclusive? Sabina did some of her own research within trans and gender non-conforming (GNC) communities to come up with some good recommendations and practical examples. Giving people a really good reason for asking their gender is one example:
“Are you monitoring diversity? Creating policies that will benefit them and other trans and GNC folks? Figuring out if they are eligible for benefits? Or is it for marketing and communication purposes? Is it for their doctor, or for their health insurance? Be transparent, explain what exactly you are asking about, and how it will benefit them. Reassure that your organization strives to be inclusive of everyone so they can feel welcome and protected while disclosing their information. As with any form field, if there isn’t a clear benefit to the user, you probably shouldn’t ask about it.”
A great comprehensive look at some of the issues trans and gender non-conforming people face when filling out forms and identity documents. This article was posted on the uxdesign.cc website.