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.
Michael Small’s Churchill Fellowship report tracks and compares discrimination laws and industry practice in relation to public buildings. He questions whether the control of the Access to Premises Standard is falling more into the hands of industry as Human Rights Commission resources are becoming increasingly constrained. Three of his recommendations are: that more training is needed for industry to help them understand the standards; more flexibility is needed for building upgrades; and better systems are needed for compliance enforcement and auditing. The title of his report is, Ensuring the best possible access for people with disability to existing buildings that are being upgraded or extended. The countries visited and compared are Canada, United States of America, Ireland and United Kingdom.
Does universal design pursue social justice or is it a marketing strategy? Aimi Hamraie takes a look at universal design from a feminist perspective and claims that this is not a value-free notion and not without symbolic meaning. If disability is a product of the built and social environments rather than something intrinsic to the body, then universally designing should be the ideal outcome of disability politics. However, the physical environment alone is not enough to account for exclusion. Also, design professions grapple with the idea that universal design is “one-size-fits-all”, which it is not. This philosophical essayhas a distinctly North American approach underpinned by the civil rights movement. It charts the history of UD, argues why design matters, and asks, “How can design be universal?” Hamraie concludes that collective access is the way forward – essentially arguing for participatory design, “shifting from value-explicit design for disability to design with and by misfitting bodies more generally.” The title of the article is, “Designing Collective Access: A Feminist Disability Theory of Universal Design”.
Hamraie is also co-author of a new book, Building Access that brings together UD history and architectural history in designing and making built environments usable by all. The authors ask who counts as the everyone of universal design. Rob Imrie says the book is, “a seminal text that will be received with acclaim and become well-known for its reconstruction of how we think about access, disability, and design.
Rob Imrie and Rachael Luck discuss universal design from the perspective of how it relates to the lives and bodies of people with disability. Their philosophic offering is the introduction to a set of eight papers in a special issue of Disability and Rehabilitation. Some important questions are raised about the role of universalism and the embodiment of disability. For example, proponents of universal design say that users are crucial to the design process, but what does that mean for the skills of designers – will they be lost or discounted? Yet these are the people who have the power to use their skills “in ways where some social groups will benefit and others do not”. The focus of universal design is often on techniques and operational outcomes, but is this enough – are there other aspects to think about? Imrie and Luck provide a paragraph on each paper and conclude:
“The papers, as a collective, are supportive of universal design, and see it as a progressive movement that is yet to realise its potential. The contributors provide insight into the tasks ahead, including need for much more theoretical development of what universal design is or ought to be in relation to the pursuit of design for all and not the few. This includes development and deployment of concepts that enable non-reductive conceptions of design and disability to emerge, aligned to political and policy strategies that enable universal design to become a socio-political movement in its broadest sense.”
The title of the editorial of the special edition of Disability and Rehabilitation is, “Designing inclusive environments: rehabilitating the body and the relevance of universal design”. Thought provoking reading for anyone interested in UD as a social movement as well as design thinking. There is more on their universalising designblog site.
People with disability are now recognised in the global health landscape, but recognition has to be turned into action. Nora Ellen Groce points out in Global disability: an emerging issuein The Lancet, that disability is not diminishing overall because of better medical interventions. With ageing populations, natural disasters, and conflicts bringing wars and civil unrest, the number of people with disability is likely to increase. Groce argues that in spite of international conventions for furthering the rights of people with disability, the Sustainable Development Goals and the Millennium Development Goals, more action is needed – much remains to be done. She says, “… the question is no longer if but how people with disabilities are included in global health efforts.” We have to go beyond well-intentioned policies and turn them into action. While this short paper is set in a global context, the same call is needed at a local level – less talk, more action please.
Bank SA has trained their staff to recognise customers with dementia and to help them carry out their banking tasks more comfortably. Often there are simple solutions. For example, as reported in theAge Care Insight article, one customer started to come into the bank weekly instead of fortnightly for her pension. She would become anxious if it wasn’t pension week and no money was deposited. So they set up a system of transferring her money weekly instead of fortnightly so that she regained her confidence in being able to pay her bills. Understanding dementia is key to providing good customer service and supporting people to continue to live in the community. Find out more about the types of dementiaand the warning signs, which include: confusion about time and place; poor judgement; difficulty performing familiar tasks, and problems with words. Memory loss, or forgetfulness is the most likely first symptom of Alzheimer’s disease.
The ageing of the population is often talked about in catastrophic terms, but when it comes to actual catastrophes, the needs of older people are not always considered. And it is not just physical needs – fears and anxieties can make older people resistant to rescue. Australia is not immune from major disasters. We have experienced several extreme weather events this summer as well as bush fires. Fortunately we have good disaster systems ready to cope – but there is always room for improvement. A recent study shows that even in developed countries, such as Japan, older people are more likely to die in a disaster than younger people. In the tsunami of 2011, 56 per cent of those who died were 65 and over, despite this group comprising 23 per cent of the population. HelpAge International’s findings on older people and disasters are reported in Disaster Resilience in an Ageing World. Anyone involved in disaster relief or emergency service might want to check their policies and response systems for the inclusion of older people and their needs in disasters and emergency situations. There is a related article in the International Journal of Emergency Management – Recognising and promoting the unique capacities of the elderly. It also discusses how older people are at greater risk in major disasters.
If you haven’t seen an Easy Read version of an official document, have a look at the Easy Read version of the National Disability Strategy for Aboriginal and Torres Strait Islander People with Disability. The Australian Government is working towards better outcomes for Aboriginal and Torres Strait Islander people. An Easy Read document for people who don’t actually need an it is great for getting a quick grasp of the content when reading time is short. Once again, something originally designed with a small group in mind suits a lot more people. The Australian Government’s web pagehas links to full PDF and Word versions, and there are audio versions as well.
Anyone interested in the philosophy of rights, inclusion and justice from the perspective of Amartya Sen’s capability approach will find Andrea Broderick’s article interesting. In this case she is discussing the right to education. In her conclusion she says, “According to Sen, the question ‘equality of what?’ is pivotal in the search for justice. As demonstrated in this article, the capability approach inspires a four-part framework based upon justice and equality of capabilities. It advocates that social structures should respond to human diversity and allow for human flourishing”. The full title of the arricle is, Equality of What? The Capability Approach and the Right to Education for Persons with Disabilities.
Abstract: The right to education is indispensable in unlocking other substantive human rights and in ensuring full and equal participation of persons with disabilities in mainstream society. The cornerstone of Article 24 of the United Nations Convention on the Rights of Persons with Disabilities seeks to ensure access to inclusive education for persons with disabilities on an equal basis with others as well as the full development of human potential. Since the adoption of the Convention, there has been much theorising about inclusive education; however, there has been little focus on the meaning of equality in the context of the right to education for persons with disabilities. The capability approach, developed by Amartya Sen and further refined by Martha Nussbaum, focuses on ensuring equality and developing human potential. It is often viewed as a tool that can be used to overcome the limitations of traditional equality assessments in the educational sphere, which only measure resources and outcomes. This article explores whether the capability approach can offer new insights into the vision of educational equality contained in the Convention and how that vision can be implemented at the national level.
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?