Acceptable language regarding people with disability has changed, and standards continue to adapt as understanding and perceptions evolve. Many terms once widely used are now considered to imply inferiority and serve to marginalise people. The National Center on Disability and Journalismhas updated their Style Guide which provides alternatives to terms too often still seen in the written and electronic media. The guide also gives an explanation for why some terms are considered offensive, derogatory, and/or marginalising. Unless the context of the story relates to the disability, it might not be necessary to point to any kind of impairment. Here are a few common terms to avoid:
Afflicted with: Implies that a person with a disability is suffering or has a reduced quality of life.
Able-bodied: Refers to a person who does not have a disability. The term implies that all people with disabilities lack “able bodies” or the ability to use their bodies well. Use non-disabled.
Confined to a wheelchair: Describes a person only in relationship to a piece of equipment designed to liberate rather than confine. Use wheelchair user.
Stricken with, suffers from, victim of: These terms carry the assumption that a person with a disability is suffering or has a reduced quality of life. Use living with…
Demented: Refer to someone as having dementia only if the information is relevant to the story and a formal diagnosis has been made. Use “a person with dementia” or “a person living with dementia.” Do not use senile.
Special needs: This can be problematic where there are government funded programs for “special schools”. The term is considered stigmatising – use “functional needs” or describe the specific issue or disability.
Evastina Bjork from the Nordic School of Public Health discusses the concept of UD from the perspective of health and wellnessin this article. She traces the work done in Norway that precedes the landmark document, “Norway Universally Designed 2025” and how it relates to health benefits. Training courses in applying the concepts of UD for professionals were devised and continue to be revised and adapted to keep pace with new learning and updated evidence. Although an academic paper, the discussion about education and training, and application of UD in the health and wellness field is a refreshing perspective.
Language is more important than many people realise. As toddlers we start with nouns – naming things. Until we can name things, they cannot exist. For example, until we could say “policewoman” there could be no women in the police force. When it comes to language around disability naming is important. It is personal, which can mean there is no consensus. For example, in the UK the generic term is “disabled people”, in Australia it is “person with disability”. Each has their reason for their choice. Then there are particular disability groups that like to identify with a specific name, such as “I am autistic” or “we are autistic people”. Robin M Eames has written a thoughtful blog page on this topic and gives us plenty to think about. The bottom line is, check it out first and don’t assume about terms. As for Robin, she describes herselfas “a queercrip writer/artist/activist living on Gadigal land (Sydney, Australia).” There are lots of good reference links at the end of the article.
Champions of universal design are often told that to effect change you need a good economic argument. Several such arguments have been written, but have met with little success in terms of gaining greater acceptance of universal design and inclusive practice. Shops, buses, buildings, hotels, meeting places, schools, parks, tourist destinations, and homes still remain inaccessible to many. The tourism sector has recognised that telling hotels and holiday businesses that they are missing out on a significant market is not sufficient of itself to make change. What is needed is more “How to…”. The latest publication discussing economics, is on the purchasing power of working age people with disability. It travels over familiar ground with the latest statistics, facts and figures relative to the United States. It compares the disposable income of people with and without disability and with different disabilities, and goes on to discuss the data from a marketing perspective.
A diagnosis of dementia used to mean staying home and being cared for. Those who work in the area of dementia are doing their best to change this view. 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.
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?
The Missed Business booklet originally devised by the Australian Human Rights Commissionand Marrickville Council has been updated by the NSW Business Chamber. It gives key messages in simple sentences and information is presented on three pages with lots of graphics. The layout is designed for two page spread so font is small for online reading. Nevertheless it is good to see this publication appear again to help small business. There are links to additional documents. You can access the guide online or by downloading the PDF document directly. So, no more missed business!
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.