Consulting people with disability

Front cover Consulting with persons with disabilities.
Full guidelines

Consulting people with disability need not be scary or difficult. Not if it is planned well. Yes, of course it takes time, but all consultation takes time. But it is always worth it because it saves time in rectifications later. 

The United Nations Inclusion Strategy has guidelines for consulting persons with disabilities. The main guideline document is very detailed and links with the UN Convention Indicator 5. It covers representative organisations, when to consult, and how to do it. Thankfully there is an Easy Read version too. 

Front cover of Easy Read Guide Consulting people with disability.
Easy Read version

The Easy Read version encapsulates the key information. The importance of consulting, taking part in decisions, and working with representative organisations are covered. There are links to the 2030 Sustainable Development Goals with the promise of “leave no one behind”. 
One key point in this version is that people with disability should be involved in decisions about everything – not just things to do with disability. 

 

Inclusive Cities: More than a ramp

a series of black icons on white background depicting people of all shapes and sizes, including a baby in a stroller, a person with a can and a wheelchair user. Inclusive cities - more than a ramp.
Some disabilities are invisible

Depending on personal experience, the term “access and inclusion” means different things to different people. The idea of who is currently included and excluded is often framed by this experience. People with invisible disability are easily left out of “access and inclusion”. For example, people with intellectual disability, different cognitive conditions, and people with mental health issues. Consequently, inclusive cities need more than a ramp and tactile markers. 

Inclusion is one group looking at another group and thinking about "Them". Inclusive Cities - more than a ramp.
Inclusion is one group agreeing to include another.

Planning and social policies talk of inclusive cities and social sustainability, but making it happen is another matter. Gains have been made in terms of accessibility for wheelchair users and people with vision impairment. That’s because it is written into the building code. What we don’t have is a code for all the other types of disability that are, at first glance, invisible. People with intellectual disability are one group who find themselves sitting outside of community activities. So, in what ways can we ensure their inclusion in the city?

A literature review of research papers on this topic found some useful information. Australian researchers applied the ‘Inclusive Cities Framework’ to the papers and found that local authorities can take actions to improve inclusion at a local level. For the most part they involved community groups, local businesses and civic activities.

Key points

    • Information and support for community groups, local businesses, potential employees and potential mentors.
    • Shared activities (both structured and unstructured) to share learning, activities and build relationships
    • Conversation and sharing of stories – in formal and informal ways, to share information and networking both across and within community groups and all citizens, whether they identify as having an intellectual disability, as potential employers, employees, and com-munity leaders. 

Inclusion of people with intellectual disability relies on having interpersonal relationships within the community. It has to be more than just being on the member list or in the room with other people. Quality of participation is the point of an inclusive city. 

The title of the article is: Towards inclusive cities and social sustainability: A scoping review of initiatives to support the inclusion of people with intellectual disability in civic and social activities. It is an open access article.

Highlights

    • Aiming to be inclusive for all does not automatically lead to participation for all people.
    • People with intellectual disability continue to be excluded from the full experience of cities – despite an awareness of social sustainability.
    • This paper identifies how people with intellectual disability are impacted by policy and practices around citizen involvement.
    • The experiences of people with intellectual disability inform how the Inclusive Cities Framework is understood and applied to define meaningful participation for all people.

From the Abstract

The inclusion of people with intellectual disability in cultural and civic activities is an important particularly in the context of supporting the social sustainability of our local communities and cities. Local governments and community organisations are poised to play a pivotal role in the inclusion of people with intellectual disability.

We undertook a scoping review of local inclusion building initiatives in Australia and other countries that helped connect people with intellectual disability with their local community. The role people with intellectual disability played in the assessment and evaluation of these resources was also examined.

Analysis of the results offers opportunities to consider the ways in which the personal preferences of people with intellectual disability can be interwoven with structure and levels of participation to improve social inclusion in their local communities.

From the Editor: I wrote a conference paper on inclusion and inclusiveness. See the post on What does Inclusion really mean? 

Manchester and Brussels: A place to grow old

A city square in Belgium showing heritage architecture. People are milling about in the square in Brussels.
Brussels city square

The WHO Age Friendly Cities and Communities framework remains a robust method for creating age-friendly places. We can learn a lot from cities that signed up to the WHO Global Network that began in 2007. A book chapter compares Brussels and Manchester as a place to grow old. It shows that different policy approaches result in quite different outcomes.

The first part of the chapter covers introductory material and detail about the 8 domains of the WHO program. The interesting part, especially for local government, is the comparison of approaches and outcomes for Brussels and Manchester. Brussels, for example, focused on social housing for older people and street safety. Manchester focused on lifetime neighbourhoods and quality of life.

Manchester was more inclusive of different ethnic backgrounds than Brussels which also has a diverse population. In short, Brussels was about keeping people safe, and Manchester was about living life. The paper goes on to discuss the barriers to implementing the programme and developing age-friendly policies. There are some good recommendations at the end of this paper which was published in 2015. 

The chapter title is, Developing Age-Friendly Cities: Case Studies from Brussels and Manchester and Implications for Policy and Practice. It begins on page 277.This chapter is one of several interesting papers in Environmental Gerontology in Europe and Latin America.  

You can find out more about the Manchester Urban Ageing Research Group and a short video on what they are aiming to achieve. 

WHO Age Friendly Cities

WHO age friendly logo of 8 petals showing the 8 domains of life.Age Friendly Cities has its founding concepts in healthy ageing. Well if it’s healthy for older people it’s healthy for everyone. These cities should be walkable, compact and have infrastructure that supports liveability. But planning laws haven’t this and continue to address ageing in terms of age-segregated living arrangements. 

Canada was at the forefront of the development of the WHO Age Friendly Cities program in 2006. But that hasn’t been enough to overcome entrenched planning and development processes. No Place to Grow Old: How Canadian Suburbs Can Become Age-Friendly, found that although planners and others have concerns about an ageing population, their thinking hasn’t adapted. Consequently, little has changed in the last ten years. 

The survey found that older people were seen as a special-needs group rather than establishing inclusive policy solutions. The report makes some useful recommendations and the findings are applicable to any urban area in any location.

You can find a list of Australian cities or communities that are members of the WHO Global Network of Age Friendly Cities on the WHO website. You can also find out how your community can become a member of the Global Network.

The graphic above depicts the 8 domains of life that need to be considered in making a community age-friendly. 

 

Inclusion, Human Rights and the Market

Graphic with four circles: one each for exclusion, separation, integration and inclusion.How can we attain our rights within a market-based economy, when those who do not experience social and economic exclusion have the the power of the market in their hands? The cost of inclusion is often said to “cost too much”. This is illustrated in the proposed changes to the NDIS. Cost is also the argument some states are using to stall the implementation of accessible housing. Human rights do not feature in these arguments. 

In Western societies, justice and fairness are not inalienable rights, but a negotiated process based on mutual advantage. According to Mutual Advantage theory we have to be pragmatic about human rights in a market-based economy. The excluded need to bring a benefit to the negotiating table. Rights get enacted only after a cost-benefit analysis has been carried out and “the excluded” are assessed as being “affordable”. That is, “can we afford to include them?”. This is the wrong question. It should be, “what does it cost to exclude people?” And who is listening to the position of the excluded? 

Market economists rarely reside in the excluded group fighting for rights. Measuring disadvantage and exclusion is not something they find easy to measure. Yet they do have a cost to individuals, society and the economy. 

For more on this discussion, see my paper from the 2014 Brisbane Housing Forum. The content is once again current. It includes an explanation of Mutual Advantage Theory by Lawrence Becker. 

PDF document Housing Forum Brisbane 2014  

Word document Housing Forum Brisbane 2014  

Reference: Becker, L.C., 2005. “Reciprocity, Justice and Disability”, Symposium on Disability, Ethics, Vol 116 No.1, University of Chicago Press, p 9-39.

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.