A decent home is a human right

Residential homes sit side by side in the landscape.New Zealand has taken a human rights approach to housing in its proposed housing guidelines. The draft guidelines circulated for comment late last year contain no specific design features. Rather, the draft is based on a set of explicit values that a decent home is a human right. The use of the term ‘decent’ is grounded in the Treaty of Waitangi and the impact of colonisation.

The guiding value is that a home is “more than a shelter, bricks, mortar or a house”. It also means a village, relationships and responsibilities to place, people and the natural environment. Consequently, the guidelines mean a decent home is a warm, dry, safe, accessible, and healthy home. The right to a decent home also takes account of the historical, social, economic and legal context in New Zealand.

The private sector is expected to play their part in implementing decent homes. Human rights are not just government business, and that universal design has a role to play:

“One way for individuals, communities, government and the private sector to implement the UN ‘decency’ housing principles is to promote universal design. Universal design advances inclusive, accessible, healthy building and environment and respect for cultural diversity. It considers people throughout the life cycle from childhood to old age, and is alert to different scenarios, including disability.”

The inclusion of first peoples in the construction of the guidelines contrasts with other countries and their housing policies. 

UN Conventions cited

The draft guidelines are underpinned by New Zealand’s obligations to several UN Conventions, which it lists as: 

– Universal Declaration of Human Rights (1948)
– International Covenant on Economic, Social and Cultural Rights (1966)
– Convention on the Elimination of All Forms of Racial Discrimination (1965)
– The Convention on the Elimination of All Forms of Discrimination Against Women (1979)
– Convention on the Rights of the Child (1989)
– Convention on the Rights of Persons with Disabilities (2008)
– UN Declaration on the Rights of Indigenous Peoples (2007)

There are 19 Guidelines in total each with a rationale, history and context. The document is 37 pages but easy to read.  There is also a Word version on the New Zealand Human Rights webpage together with an overview of the guidelines. 

 

What is Easy English and who needs it?

An example of Easy English explanation of COVID-19.
Example of Easy English

Easy English is a good example of how less is more. But conveying messages in fewer words is more difficult than writing more words. Cathy Basterfield’s presentation at the UD2021 Conference gave an overview of Easy English, who needs it and why. 

If I were to write this post in Easy English, I would be using short sentences and everyday words. I’d also be leaving lots of white space on the page. I’d probably be using related images and graphics. I do try to keep the language simple and to the point, but it is not the same as writing Easy English.

Presentation slide explaining that access to information is part of universal design.
One of Cathy Basterfield’s presentation slides.

More than 40% of the population has low literacy skills. In some remote parts of Australia and in institutions it is higher than this. There are several reasons why so many Australians need information in easy to understand formats:

– acquired disabilities
– lifelong disabilities
– poor educational outcomes
– psychiatric or mental illness
– dyslexia
– early school leavers
– older people
– different cultural backgrounds
– hearing impaired and/or people from the Deaf community

Accessibility and universal design needs to be considered at the outset of any project, not as an afterthought. Information formats such as brochures and websites are no exception. Some important government documents include an Easy English or Easy Read version, but this is still rare. This is also a forgotten element of the UN Convention on the Rights of Persons with Disabilities. 

Proficient readers can use Easy English versions to get the take-home message quickly and easily. That’s also why it’s universal design – it’s for everyone. 

Cathy’s presentation slides are helpful in understanding Easy English and why there should be more of it. The Bumpy Road website is a good example of Cathy’s work for interacting with the justice system. 

Cathy has a blogsite that explains more. She did a lot of work for COVID-19 too. 

 

Go-along walking for dementia research

An older man with a walking cane walks along a path in a park. He is by himself. Understanding the experiences of people with dementia is difficult if they cannot express those experiences well. The next best thing is to observe those experiences. That’s what the go-along walking method is – an observation of how people with dementia experience the environment. 

Researchers carried out go-along walking interviews with fifteen people with dementia. They followed this up with sit down interviews that included a family member. The participants’ stories of venturing outdoors showed that they were aware of their changing circumstances. They all shared a sense of vulnerability and not knowing if they could trust strangers to help if they needed it.

Dementia also has a gender dynamic. Male participants were willing to relinquish control to their wives, whilst female participants were prepared to adapt to changing family dynamics. Men still wanted to be seen as independent as this equated to ‘manliness’. 

A dementia-friendly environment is one thing, but alleviating the pervading personal sense of vulnerability is also important. Regardless, the research showed that people with dementia are able to take responsibility and create other ways of being in the outside world. 

The title of the article is, On being outdoors: How people with dementia experience and deal with vulnerabilities. It’s available for download from ResearchGate

From the abstract

This paper advances understanding of how vulnerability is experienced and dealt with by people with dementia when outdoors, and at times shared with family carers. We found that for the person diagnosed with the condition, an awareness of failing knowledge about oneself or the ‘rules’ of outdoor life, which individuals experienced emotionally and dealt with civically. People with dementia attempted to manage risks and anxieties, often doing this independently so as not to burden family members. 

Ruth Bartlett has a follow up article that builds on this work. The title is, Inclusive (social) citizenship and persons with dementia. It is published in Disability & Society and needs institutional access for a free read. Or request a copy from the author. 

From the abstract

The study found that access work entailed three spheres of activity: ‘access to location technologies’, ‘access to ordinary places’, and ‘consciously sharing the responsibility of access work’. Overall, this article contributes to the growing literature on cognitive accessibility by evidencing the mental demands of access work, as experienced by people with dementia, and need to share the responsibility of access work between humans and non-humans, and state and non-state actors.

 

Stella Young and Inspiration Porn

In this entertaining video the late Stella Young talks about how we have been sold a lie about people with disability being ‘inspirational’ for just being themselves. She argues that people with disability are objectified in this process as being ‘special’ in some way. They are discounted as normal everyday people doing everyday jobs in an everyday world. On the topic of a positive attitude Stella says, “No amount of smiling at a flight of stairs has ever made it turn into a ramp.”

 

The economics of assistive technology

Chart showing return on investment for individuals, families and society.Why is some technology called “assistive” technology?  After all, isn’t all technology assistive? It seems that any technology developed for people with disability is assistive, while other technology is just, well, technology. Technologies specific to disability used to be called “aids and equipment”, but we have moved on. Smart phones are  everyday technology for most people. For people with disability they can also be an important part of a suite of technologies. 

In Australia and other countries, access to assistive technology (AT) is not automatic. It has to be applied for and justified and then a budget assigned to it. Some people have to resort to charities for help. Imagine if you had to do this for cancer treatment. Denying and delaying access to AT comes at a cost. It’s a quality of life cost and an economic cost to the wider community. Instead of talking “cost” we should be talking “investment”.

The value of providing AT is documented in a global report. The research focused on four devices, hearing aids, prostheses, eyeglasses, and wheelchairs. They found that for every one dollar invested, nine dollars are gained. That’s a return on investment of 9:1.

If we include home modifications in the suite of technologies to enhance functioning and independence, we would no doubt find similar a return on investment. It would be a better investment if homes were universally designed in the first place. This is one study that recognises the benefits to the whole family, not just the individual. This is an important point. Most people with disability do not live alone. 

The title of this important document is, The case for Investing in Assistive Technology. Replace the words “assistive technology” with built environment and housing and the report still makes sense. AT requires the rest of the world to be accessible and universally designed. That way, we can all benefit from people getting the AT they need when they need it. 

The research was funded by several international organisations. The four AT items in the research are more readily available in Australia than other countries. But there is much AT that is not readily available when it is needed. Only a very small proportion of people with disability are eligible for the NDIS.

Easy English and Bumpy Road

Home Page of Bumpy Road website showing nine coloured sections, each with a separate document.Everything seems more difficult when life is spiralling out of control. And when you can’t understand the forms and documents people are asking you to read, it gets so much harder. Going to court to sort things out is very stressful and even more so if you don’t understand what’s going on. 

A new website called The Bumpy Road was developed with and for parents with intellectual disability. There are 32 fact sheets on interacting with NSW Community Services and the court system. They cover child protection, going to court, meeting with a lawyer, the role of an advocate and tips from other parents. Information is in Easy English and video format. Child Protection is a companion document. Much of the content will apply to other states. 

Women With Disability Australia website hosts many Easy English publications.  If you scroll down you will find Auslan videos among others. Scroll further and there are documents in Kriol, Torres Straight Islander Creole, and Warumungu.

Your Human Rights Toolkit is a bundle of four documents in Easy English.

Easy Read UN Convention on the Rights of Persons with Disabilities is also a good resource for getting a grasp of this long complicated document.

Editor’s comment: I’d like to see Easy Read and Easy English standard for all organisations . Universally designed documents make so much sense for everyone. It gives an opportunity to get the key points and before looking at a more complex document.

Easy Read UNCRPD

Front cover of Enable Easy Read version of the UN ConventionWe hear people talk about the UN Convention on the Rights of Persons with Disabilities (UNCRPD), but how many of us have read it? It’s a big document and not easy to read.  It covers every aspect of life and every person of every age. The UNCRPD matters to all of us. Eventually disability will touch each of us and our family members and friends. So disability rights are everyone’s rights. But not everyone can understand the way it is written.

The Easy Read version of the UNCRPD is a great way to get a grasp of the issues. This version by Enable is complete with illustrations. There is also a child-friendly version

These documents make for handy ready reference for everyone without having to work through the UN document itself. You can access all documents through the UN website.

There’s also a great two-minute video from the Disability Advocacy Resource Unit. This is very useful for anyone wanting to get the disability rights message across, ay, in a training session or group meeting. Different people with disability each list a right that is within the UNCRPD. Nicely put together and easy to watch. 

Beginning of the video. A man is standing in a large empty room that looks like a performance space.

The Australian Human Rights Commission has an overview of human rights on their website. 

UN Strategy for disability inclusion

Front cover of the UN report with icons for the four areas of action.In the context of “leave no-one behind” the United Nations is keen to live the message of disability inclusion in its own operations. By implementing inclusive practice within its entities, the UN will be better placed to support Member States with their challenges in implementing inclusive practice. The United Nations Disability Inclusion Strategy spells out what needs to be done. 

The Strategy covers all pillars of UN work. That means the Convention on the Rights of Persons with Disability (CRPD) is no longer a side event to everything else. Disability inclusion is already written into the Sustainable Development Goals (SDGs). The Strategy was launched in 2019 and the 2020 report provides a first baseline of disability inclusion across the system. The report lays down concrete steps for improvement and to support Member States to implement the CRPD and the SDGs.

Mainstreaming is the key strategy for inclusion and empowerment. It’s about seeing people with disability as agents of change and not a vulnerable population.

There are 15 common indicators against which all UN entities will report annually. It covers leadership, strategic planning and management, inclusiveness, programming and organisational culture. Time to get real about disability inclusion.

You can read on overview on Global Accessibility News

The full strategy document is available on the UN Disability Inclusion Strategy website. A short video from the Secretary General is below. 

UN Convention on the Rights of Persons with Disabilities sets out the obligations of signatories to the Convention. Australia is a signatory to this Convention.  Each of the obligations are detailed in separate sections called Articles. There are 50 Articles.  The General Principles of the Convention align with the Principles of Universal Design.

Article 3 – General principles

The principles of the present Convention shall be:

    1. Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
    2. Non-discrimination;
    3. Full and effective participation and inclusion in society;
    4. Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
    5. Equality of opportunity;
    6. Accessibility;
    7. Equality between men and women;
    8. Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

Equitable Access to Justice

This new courtroom has timber backed seats and a long timber desk that seats the justices. A abstract painting covers the wall behind the bench. Daylight comes in through large windows.Justice systems and courthouses are scary at the best of times – even when you haven’t done anything wrong. The processes and places are foreign to most of us. Interacting with the justice system is very stressful – even more so for people with any kind of disability. It’s the same for people who come from a migrant community. 

The newly published guidelines for access to justice for persons with disabilities is available on the United Nations Human Rights web page. It gives the background and a summary of the consultation process. The title of the document is, International Principles and Guidelines on Access to Justice for Persons with Disabilities. The document was developed in collaboration with disability rights experts, advocacy organisations, states, academics and other practitioners. 

There are ten principles, each with a set of guidelines for action:

Principle 1  All persons with disabilities have legal capacity and, therefore, no one shall be denied access to justice on the basis of disability.

Principle 2  Facilities and services must be universally accessible to ensure equal access to justice without discrimination of persons with disabilities.

Principle 3  Persons with disabilities, including children with disabilities, have the right to appropriate procedural accommodations.

Principle 4  Persons with disabilities have the right to access legal notices and information in a timely and accessible manner on an equal basis with others.

Principle 5  Persons with disabilities are entitled to all substantive and procedural safeguards recognized in international law on an equal basis with others, and States must provide the necessary accommodations to guarantee due process.

Principle 6  Persons with disabilities have the right to free or affordable legal assistance. 

Principle 7 Persons with disabilities have the right to participate in the administration of justice on an equal basis with others. 

Principle 8  Persons with disabilities have the rights to report complaints and initiate legal proceedings concerning human rights violations and crimes, have their complaints investigated and be afforded effective remedies. 

Principle 9  Effective and robust monitoring mechanisms play a critical role in supporting access to justice for persons with disabilities. 

Principle 10  All those working in the justice system must be provided with awareness-raising and training programmes addressing the rights of persons with disabilities, in particular in the context of access to justice.

Brisbane court room showing the glass surround for the defendant dock and a short steep ramp to the doorway.

The picture at the top is from the Brisbane Supreme Court showing a large abstract mural behind the Judges’ bench. The picture at the bottom is an attempt to make the defendant dock wheelchair accessible. 

 

Who do designers design for?

Four women and one man sit casually around a table where there are coloured pens and drawings.Who does the designing and what do they design? If the design works, users don’t think about the designer. But when the design works poorly, or not at all, the designer becomes the focus. “What were they thinking?” is the catch-cry. In spite of much research and literature on designing thoughtfully and inclusively, we still have a long way to go. 

A short paper takes a critical look at five design approaches from last century that remain current. The author discusses “Accessible” in terms of partial inclusion and design afterthoughts. “Inclusive/Universal Design” is discussed from the perspective of eliminating disability rather than embracing diversity. Six degrees of “User-Centred Design” is the focus of this design approach where users get a say in the design. An extension of user-centred design is “Participatory Design” which is also a learning experience for designers. Lastly, “Emancipatory Design” is praised for being empowering for people with disability.

The title of the short paper is, Design Methodologies and Ethos in Disability: Research Snapshot.

Editor’s Note: The Universal Design movement is often accused of wanting to design out disability. Perhaps this view can be tracked back to the mistaken interpretation of universal as “one-size-fits-all”. The concept of universal design in the context of the UN Convention of the Rights of Persons with Disabilities is very much one of inclusion, equity and acceptance of diversity. 

From the Introduction: The subject of design is one that dominates the disability literature. Throughout the past number of years, there has been a push among researchers and advocates to think critically about the ways in which design is executed and by whom. Design has taken on a central role in the ‘normalization’ of disability. Each of these design methodologies and ethos has had an essential impact on built and design environments; however, there is still a considerable need for progress. Importantly, these design methodologies and ethos bring to light the significance of understanding that in today’s society, it is normative that environments and technologies are designed for people with disabilities, not by people with disabilities.