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.
The Department of Foreign Affairs and Trade stipulates that all overseas aid programs must follow the Principles of Universal Design. They have produced a comprehensive guide to all types of development projects including water, health, education and the built environment. It is useful to see how thinking universally about design can produce such a clear guide to inclusive practice and accessibility. This document was updated with a 2016 brochure with ten tips for promoting universal design in aid projects. There is also the companion document Development for All: 2015-2020 Strategy.
Norway’s planning policies have been underpinned by the principles of universal design since 2000. With a focus on policy, not design detail, this means everyone has to think about inclusion and accessibility in everything they do. Olav Rand Bringa, author of the early reports and papers on universal design in Norway, writes a review of progresswith Einar Lund. In the introduction, they discuss the work and writings of British architect Selwyn Goldsmith that go back as far as 1963. In his last book in 2000, Goldsmith articulates his disappointment that little progress for access and inclusion has been made. The review asks the questions, What did we learn? and What did we Gain? In short, new buildings, outdoor environments, websites and more are all designed according to universal design. However, there is much to do with the existing environment. The paper concludes with, “And Universal Design, will it remain a particular design-concept in the future or will it simply be what everyone associates with good design? We should have good reasons to expect the latter.” Also of interest is the Nordic Charter for Universal Design initiated in 2011, and the main policy document, Norway Universally Designed 2025 that was updated in 2016.
Abstract:The national policy in Norway have since the last part of the 1990s been organized in programs that erected actions including national authorities, municipalities, regional authorities and private enterprises. What have we gained by our national activities to mainstream inclusive and accessibility policy for persons with reduced capability through the principles of Universal Design? Have we made society accessible to everyone and prevented discrimination. Are the results visible? We can measure results on several sectors, inter alia public buildings, outdoor areas, central communication hubs, public transport and the occurrence plans for Universal Design in municipalities and regions. Through several programs and action plans the Norwegian government has developed a sectoral approach for including persons with disabilities in the society. The majority of ministries have participated in these plans. Local initiatives, local councils for disabled people, and later on municipalities and county administrations were supported by national authorities as complements to regulations and laws. In addition, guidelines and assisting funds were used. The main objective was to redefine the national policy, using better defined national goals and introducing Universal Design to replace accessibility as the basic tool. The mainstreaming of the accessibility policy, where Universal Design was included in relevant sectors and activities, was a crucial part of the strategy. The national policy was organized in programs that erected actions focusing on how to reach, inspire and include municipalities and regional authorities in their own struggle for Universal Design. Through the mainstream approach ministries have both earmarked economic transfers to their own agencies and used steering documents guide to these agencies how to implement Universal Design in their advisory services, in practicing laws and regulations and in their own planning and building activities.
The full title of the paper is, From Visions to Practical Policy: The Universal Design Journey in Norway. What Did We Learn? What Did We Gain? What Now?
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.
In her introduction to Disability Inclusion in Climate Change: Impacts and Intersections, Marsha Saxton begins, “Mention “climate change and disability” and most people are immediately puzzled— it’s an issue that has often never occurred to them…” This is an article about the right to be rescued. Saxton argues that while people are now aware of this group, they are somewhat at a loss about what to do. Disaster guidelines and related literature talks of “people with access and functional needs” and “individuals requiring additional assistance”, but this terminology has not entered the climate change literature. This is quite a long article, but comprehensive, including responsibilities under the UN Conventions for Climate Change and for Persons with Disability. The article concludes, “Responses will require large-scale initiatives, focused actions and strong collaborations between stakeholders across the climate and disability spectrum. It is fortunate that those currently addressing climate change and disability, respectively, are well-engaged with a social justice framework. Both groups must understand the scope and complexities between climate change and disability. The key is thus to educate and activate these stakeholders to develop strategies to safeguard people with disabilities as climate change unfolds.”
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.
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?