Legal documents favour visible disabilities

A man's hand is writing the word regulations in large script style writing.Norway has been following the underlying concepts of universal design for 25 years. This means they have a history of policy and activities to reflect upon. Previous papers have highlighted successes and where there is room for improvement. A new Norwegian study looks at universal design through a legislative lens and finds legal documents favour visible disabilities. 

In more recent years, people with invisible disabilities have raised their voices in the disability rights movement. However, their voices are yet to be incorporated into legislative documents. Historically, people with mobility and vision impairments led the way in disability rights. This means their needs were front of mind when legislation was formed. 

The Norwegian researchers wanted to find out if there is a “disability prestige” at play. This is where some disabilities count more than others. Or is it something as basic as just having your disability visible to others? The researchers concluded that visibility was more important to explain discrimination between groups. 

The Norwegian study can be generalised to many other countries. In Australia the Access to Premises Standard also favours people with mobility and vision impairments. 

The Norwegian researchers carried out their study in the context of transport. They discuss the wording of documents and how terms such as “reduced mobility” are interpreted. It can mean a person with a physical and/or a cognitive impairment. However, it is most often linked to movement of the body. 

Prestige versus visibility

In the Norwegian documents mobility impairments are mentioned more frequently than other disabilities. Vision impairments, also frequently mentioned, come in second. The researchers conclude that discrimination between disability types is mostly explained by the visibility of a disability.  

Why does this matter? Because when provision for other disabilities and long term health conditions are not mentioned in legal documents, businesses and services don’t provide them. 

The title is, How laws of universal design discriminate between different types of disabilities – Lessons learned from Norway.

Financial inclusion for all

Looking upwards to the gable of a federation building with the name Bank on it.Financial inclusion should be a top priority for policymakers keen to alleviate poverty. Five of the Sustainable Development Goals feature financial inclusion, including reducing gender based inequalities. Access to financial services is a human right but overlooked for people with disability. 

Financial services include banking, credit, insurance and financial advisors. Each of these should be readily available to everyone. A literature review identified five key barriers:

  1. People with disability have a lower demand for formal financial services than those without disability
  2. Banks do not expect or welcome customers with disability
  3. More appropriate technologies are needed to overcome communication barriers because communication technology (ICT) fails to meet the web content accessibility requirements 
  4. Financial services are not tailored to meet the needs of people with disability 
  5. The formal financial system requires accessible public infrastructure to include people with disability.

What are the solutions?

Multi-stakeholder collaboration to counter stigma and attitudinal barriers is the starting point. Financial education and accessible assistive technology and ICT is essential as well as the physical environment of financial institutions. 

The title of the research article is, Financial inclusion for people with disability: a scoping review

From the conclusion

Access to financial services is a human right that seems to have been overlooked for people with disability. The push for financial inclusion of people with disability is a matter of economic strategy as well as a moral imperative rooted in justice and equity.

The financial sector’s landscape, shaped by innovations in ICT, provides an unparalleled opportunity to bridge the financial divide faced by people with disability. However, it will take more than technological advancements to solve the problems.

True financial inclusion necessitates a paradigm shift in attitudes, policies, and strategies. Our findings underscore the urgency to redesign financial systems that are accessible to all and cognisant of the preferences and needs of people with disability.

Addressing the multiple dimensions of financial exclusion of people with disability requires a comprehensive, multifaceted approach, integrating attitudinal change, ICT accessibility, and a commitment to disability justice. There is an emphatic call for banks, policymakers, and society to converge their efforts.

From the abstract

Financial exclusion is a human rights issue affecting health equity. Evidence demonstrates that financial exclusion is exacerbated for people with disability and those in low- to middle-income countries. Barriers to financial access include limited demand for services, banking inadequacies in catering to people with disability, and insufficiently accessible information technologies (ICT) and infrastructure.

Recommendations include using ICT, digital innovation and multi-stakeholder collaboration to address the financial barriers experienced by people with disability. These efforts, rooted in social justice, aim to include people with disability as valued financial sector participants, promoting health and equity.

 

Go-along techniques inform design

There’s nothing like getting instant feedback as people negotiate the built environment. Go-along techniques inform design because they really get to the key points. Some of the exclusions are only obvious when pointed out and that’s valuable information.

The go-along technique is where researchers walk with the participant and observe the barriers they experience as they encounter them. The dialogue that ensues provides rich information about design – how to do it and how not to do it.  

Image taken from the research paper 

Researchers in Sweden used this method and found there is an ongoing multifaceted exclusion of citizens in the built environment. This is despite current building regulations. Also, it doesn’t meet the aim of inclusion and international conventions. 

However, there are opportunities to change this with knowledge about enablers in the built environment. The researchers point universal design as an important planning variable to bring about change.  

The research paper has a lot of excellent information, much of which planners and disability advocates hear anecdotally. This paper documents the issues well and in detail. 

The necessary enablers

Benches, or seating were the most mentioned during the go-along activities. These are a decisive factor for spending a day in the city centre. People would walk more if they could also sit. 

Access to public toilets was also critical. Finding them, having access, and in some cases, navigating payment systems all pose problems. Again, another factor in visiting the city. 

People who live outside the city centre need flexible mobility systems – public transport, plus being able to use a car and then parking the car. 

Lighting in public places, clear signage and orientation board were also important along with handrails in challenging environments. 

Planning process needs a re-think

The researchers argue that there is an urgent need to rethink the planning processes to account for human diversity. It’s essential to move away from notions of an ‘average’ person or the idea of normal.

There is a gap between what building regulations state as accessible and the the lived experience of accessibility (or inaccessibility).  As the researchers say,

 “The pointing out of the necessary enablers is important knowledge to achieve accessibility also in an overall, entire-city-perspective. The concept and practice of Universal Design is a key to pursuing such a development.”

The title of the research paper is, Is the City Planned and Built for me? Photos highlight some of the key issues experienced by participants. There is a lot of really good information in this paper. 

Disability messaging guide

The Commons Social Change Library has a new guide for disability messaging. The guide has tips based on research which shows effective ways of building public support. The document was led by a steering committee of people with disability and messaging experts.

The guide is supported by Disability Action Network Australia (DANA), Centre for Australian Progress and Common Cause Australia. Access via The Commons Social Change Library or download in PDF.

Website banner for the disability messaging guide. Dark blue background with white text surrounded by a narrow yellow border.

Key content

The guide begins with a note about language and why they prefer the term “disabled people”. The introduction covers the messaging principles such as the audience and speaking from the frame of experience. The overarching themes for talking about disability are self-determination and diversity. This is followed by the 7 top tips.

  1. Story structure
  2. Design Frame
  3. Strengths language
  4. Our story, not theirs
  5. Bring NDIS back to values and benefits
  6. Build empathy with human stories
  7. Show change is possible
People on a fun run with two older adults being pushed in wheelchairs.

The guide has good examples to explain concepts and how to change old messages into ones that are more attuned to self determination. One example is to talk about being “led by disabled people” rather than “a seat at the table”. The reasoning is to replace inclusion and tokenism with self determination.

Another example is making passive sentences active. Rather than talk about how disabled people experience discrimination, say who is discriminating. And people like to be presented with solutions rather than problems so focus on these. 

The title is By Us, For Us: Disability Messaging Guide.

Disability organisations as social participation

Clubs and societies bring together members with a shared interest which also provides a platform for social participation. The same can be said for disability organisations – with some differences. Disability organisations are a hub of social activity, political activism, and a resource of lived experience for planners. A paper from Sweden looks at this concept focusing on rural communities.

Researchers found that interviewees have extensive social lives and that disability organizations act as a platform for many social interactions.

Two women sit under trees in an outdoor cafe. One sitting on a bench seat at a table and the other is using her rollator or wheelie walker as a seat.

Sometimes acquiring a disability such as rheumatism, prompts people to join groups such as the rheumatism association. Some disabilities cause people to leave paid work so this gives them time to channel their energies into these civic organisations. But it doesn’t end there. Members of these organisations also provide valuable lived experience for local authorities in planning.

There are three dimensions to disability organisations: social participation, political action, and a resource of lived experience. Just on the basis of participation, disability organisations provide good value for their government funding.

Protesters at a disability access rally. A woman is sitting in a wheelchair holding a sign saying access for all. She is wearing a blue jacket and wearing sunglasses.

Disability organisations, and the disability sector as a whole, provide inclusive spaces in which to socialise. The strength of inclusive spaces is they facilitate participation on equal terms. On the other hand, disability-specific places are potentially more flexible and adapted to individual needs. Disability organisations are a form of a disability-specific space which form a base for recognition and a political voice.

Living rural with disability

Living with disability in rural areas is viewed as more of a problem than in urban areas. According to the researchers this is a simplification of how people relate to their environment. Rurality and disability are two different concepts which are not complicated when put together.

The article is titled, “I am a very active person”: Disability organizations as platforms for participation in rural Sweden. The link provides an extended abstract and the full paper is available via institutional access.

A rural road with homes on each side. The homes are painted dark red with white windows.

From the abstract

Disability organizations are places for social interactions and for the accumulation of knowledge about disabilities as lived experiences. They also form a platform for dialogues and political influence work in the local community.

Participation means being included in societal activities in a way that suits the individual’s capacities and ambitions. The role of the public sector also enables participation. That’s because, in Sweden, it supports disability organizations and opens up opportunities to influence local planning.

If more support is given and more disability-specific arenas are created, there will be more open arenas for possible participation. What counts as participation must begin with individuals’ own experiences and values of what they appreciate and need in their daily lives.

Co-designing social housing policy

Co-designing social housing policy is a relatively new concept in Australia, so it’s good to see tenants involved in policy development. New AHURI research tackles the issues amid the need for urgent reform of the housing sector. Tenant participation leads to benefits for all involved.

‘For policy co-design methods
to work well, there must be
respect and recognition of the
expertise of all participants
involved in the policy making
process…’

A new three storey housing development still has the chain link fencing around it. Social housing policy.

AHURI’s summary paper of the research acknowledges the role of champions within organisations who must lead the development of the design processes. Otherwise, they are not successful or sustainable. However, they require resources and support for these processes to succeed.

Attracting ‘representative’ tenants is difficult because those with the most complex challenges often cannot spare the time because they are in crisis. If participation programs are online or use written forms, only those who can read will be included.

What’s needed for successful co-design

Other important findings from the research include:

  1. A toolbox of participatory methods is needed for engagement across the diverse population who have varied needs for housing assistance.
An old wooden box with mental handles and clasp.

2. Recognition of expertise of frontline staff is an important but untapped source of potential policy expertise.

3. An ongoing commitment is necessary to resourcing, investing in, and training workforces, and building participant capability and supports for policy co-design. And an evaluation program to confirm what works well, under what conditions and for whom.

The title of the policy summary is, Including social housing tenant voice in policy leads to better outcomes.

The report’s executive summary, Social housing pathways by policy co-design: opportunities for tenant participation in system innovation in Australia has more. Or you can read the full report as well.

Information in an emergency

Getting information in an emergency can mean the different between life and death. Or at least the difference between feeling helpless and knowing what to do. But communication is a complex process and not everyone responds to the same methods. So what is accessible information? It’s information provided in different formats.

Easy Read and Easy English use pictures as well as words. These are good for the 44% of the population with a low level of literacy. Targeting this group means people with higher levels of literacy can also get the message. It’s universal design.

A blackboard with words: learn, language, adjectives, nouns, verbs, adverbs written in chalk

Other formats are braille and Auslan, and captioning for videos. The Disability Discrimination Act lists places and services that must not discriminate, but there is nothing specific about information methods. This is something that needs to be made clearer in the legislation. However, the Commonwealth and state governments have policies to cover the provision of information.

Accessible emergency and crisis information

Researchers found four things to improve crisis information.

  1. Accessible information providers, such as Easy Read professionals, are not experts in the subject at hand. They need support from experts such as doctors or police.
Black and white logo for easy read, has a tick and a open book

2. Accessible information providers need to stay up to date with changing details. Having one direct source is the best way to manage this.

3. Making high quality accessible information takes time and skill. It’s essential to have the capacity and capability ready to act – don’t wait for the crisis to happen.

4. Agencies need to be upskilled. Sometimes crisis information needs to be available immediately such as an evacuation order. Emergency services need more baseline skills to make this information themselves.

The title of the article from The Conversation is, Crisis communication saves lives – but people with disability often aren’t given the message. The call for action is to have accessible crisis information included in a new Disability Rights Act.

Four men with orange lifejackets are standing in a yellow State Emergency Service boat on a swollen river.

Media organisations, businesses and services need to get on board too. The more people who produce accessible information, the better.

Ableism in health care

You’d think health care workers would know about disability, but apparently, disabilities are not discussed or taught in a health care context. Questions over quality of life, ability to decide and choose are all issues that affect people with disability when interacting with the health profession.

An article written by two nurses calls out ableism in health care. Ableism occurs when a person with disability experiences discrimination or prejudice from a health care provider.

A man in a turquoise hospital gown, cap and mask is holding a thumbs up sign. He looks like a nurse or a doctor.

They can underestimate the person’s quality of life or competence which affects their level of care. Patients need to feel safe and not to be fearful of being judged or not being heard.

Case study

The article uses a case study of a 60 year old women with Down syndrome to illustrate the issues during the COVID pandemic. This case is not about the care provider being ableist, but being an advocate for the woman. The doctor was pressured by family members to activate the do not resuscitate (DNR) code when the woman entered ICU. The doctor persisted in advocating for the patient and she eventually recovered.

Communication with patients is key. Patients with cognitive disabilities may face attention, memory and comprehension challenges. Nurses must therefore adapt their communication style, learn about the disability and avoid negative language that insults or demeans.

The authors encourage nurses to advocate for people with disability within health care services and in the design of environments.

Entrance to the emergency section of a hospital.. Co-design and ableism in health care.

Ableism isn’t just about patients – it includes family members, and other health care workers. Knowledge can help overcome stereotypes and stigma and improve health and wellbeing for all. Knowledge also helps nurses and other health professionals to feel confident when engaging with people with disability.

This short summary of Ableism in Health Care is open access, and you can access the full paper in the American Journal of Nursing.

Emergency awareness and universal design

A smartphone with a map and wording of Fires Near Me. It is the app of the NSW Rural Fire Service. It helps with emergency awareness.

Why do some people appear unable to take in what is happening around them in an emergency? Being able to act quickly requires a good sense of the situation. However, not everyone has a sense of emergency awareness. Consequently they find decision-making difficult and fail to act appropriately. A Norwegian study has investigated a universal design approach to mitigate this lack of awareness.

In an emergency, sight, hearing, use of hands and ability to concentrate can all be impaired. Smoke, dust, cold, noise and paralysis from fear can affect anyone’s ability to think clearly. Smart phone apps are a good way of reaching people quickly with important information, but do they account for likely cognitive and physical changes?

The issues and solutions for “situational disability” are outlined in a technical paper from Norway. It raises our awareness that individuals are likely to behave in unexpected ways during a disaster. With an increased rate of climate-based disasters, and the move to digital information systems, this is a timely study. The underlying concern of how people respond is an important one. The paper shows that universal design principles can guide the way in compensating for a lack of emergency awareness.

The full title of the article is, Towards Situational Disability-aware Universally Designed Information Support Systems for Enhanced Situational Awareness.

Emergency Design: Designing as you go

A woman is sitting on the ground and is being helped by a person in protective clothing and a hi vis vest. The woman looks distressed.

Designing FOR an emergency IN an emergency requires a different design approach to existing tried and true methods. When urgency is the driver of design, processes and methods need a re-think. COVID-19 is a clear case of designing for an emergency during the emergency. So how can “designing-as-you-go” be done?

Designs for emergencies, such as wars or an earthquake, are usually devised before the event. Or they are designed after the event in preparation for future events. The COVID pandemic arrived without notice and few countries were prepared. Hence the need to design for the emergency while it is happening.

A different approach

A case study from Brazil shows how a totally different design approach was required. Rather than using standard methods the researchers took an organic approach to the problem. It was basically designing on the run. The process encouraged the inclusion of people who are often marginalised. While history tells us that Brazil is has not fared well during the pandemic, the study still has value for future situations.

Their approach is based on qualitative techniques. They relied on the knowledge of local people and processes of working together in a horizontal rather than hierarchical format. This approach also allowed participants to see how they could deal with the current situation as well as improvements for the longer term. 

“As a path, we point out the importance of identifying areas of convergence of interests, the creation of win-win policies and the daily encouragement of a culture of collaboration at the differing levels.”

The title of the paper is Design amid Emergency. It charts what they did, how they did it and what they learned from the process. Identifying areas of common interest and developing win-win policies to encourage a culture of collaboration was key. In summary, they found the co-creation design process the key to success. It can lead to improved quality of life in both the short and longer term. It also helps to embed resilience within the population. 

The government saw the value of co-design with citizens. It remains to be seen if they actually follow through on this networking approach to solving issues.

From the abstract

This article presents the process for the “Design of services under the COVID19 emergency social protection plan”. It was drawn up by a team of researchers and designers from Porto Alegre in collaboration with the Porto Alegre City Government.  The focus was on the provision of essential benefits to homeless and other vulnerable people during the pandemic.

The process was developed for the designers involved: without prior notice, within very short time frames and completely remotely, using only digital platforms. As such, the process was developed to respond to the emergency and amid the emergency. The objective of the article is to discuss how to design amid emergency.

The experience was guided by the methodological principles of action research and research through design. In addition to presenting the design results solutions aimed at the short, medium and long term. This article highlights the need to aim for the recognition of difference, the suggestion of alternative views, social innovation, the systemic transformation of society and sustainability.

Socioeconomic benefits and costs of universal design

Access and inclusion are considered a “good thing” until someone asks, “what will it cost?” Rarely does anyone ask “what does doing nothing cost?”. Many of the benefits are on the social scale, but are difficult for orthodox economists to measure with their current tools. So what to do about it? A report from Norway looks at studies of the socioeconomic benefits and costs of universal design and accessibility.

There is a risk that a disproportionate emphasis is put on the costs and benefits of universal design rather than its broader societal benefits.

Part of the front cover of the universal design and socioeconomic analyses report. It shows a blue city tram with a person about to board.

The Nordic nations are really keen to implement universal design policies. The high priority that Norway gives universal design makes it an international leader. Other Nordic countries are yet to show the same commitment. The report maps international socioeconomic analyses and related analyses. Although using different methods, the studies emphasise cost-benefit analysis.

Why do an analysis?

Cost-benefit analyses are commissioned for different reasons. There are four main types:

1. regulatory impact assessments to analyse the potential socioeconomic consequences of new legislation and regulation related to universal design or accessibility;
2. business case studies of the profitability of investing in universal design and accessibility;
3. cost-benefit analyses as part of an assessment of reasonable accommodation, primarily with regard to discrimination legislation; and
4. research projects examining the effects of accessibility measures in general, or of specific measures, or their benefit to different target groups.

What do they look at?

Most of the analyses are about housing and the built environment with a focus on legal access requirements. The studies mainly focus on the consequences in terms of participation, employment, risk of falls, and health benefits for people with disability.

Street scene of Oslo showing footpath dining and 2 cyclists.

In the transport sector, studies mainly looked at travel time and willingness to pay more to improve accessibility. Business case studies dominate the field of information and communication technology.

Costs are usually easier to measure in monetary terms than benefits. Assumptions based on hypothetical reasoning, such as accessibility results in increased employment, lacks evidence.

From the conclusions

Many studies indicate there are significant benefits for people with and without disabilities. However, evaluating these benefits against quantifiable costs entails other variables.

Regulatory impact assessments of new legislation lacks data for calculating different effects. Specialist consultancy firms often carry out these assessments as government staff lack expertise.

In other studies, new knowledge emerges but with different methods. Designing these studies and collecting data is a constant challenge. Measuring the benefits of universal design in its broadest sense is even more difficult than measuring statutory access requirements.

It is at least as important to study why people choose not to use, say public transport, as it is to study the benefits for those who do. Any cost-benefit analysis of universal design and accessibility must be accompanied by what constitutes a cost and for whom.

The report presents areas for improvement and development including the ongoing exchange of experience and knowledge.

The title of the report is Universal design and socioeconomic analysis: A survey of analyses and literature. The main part of the report is in Swedish, but the English language summary begins on page 105. Included in the list of documents at the end is the Australian Building Codes Board Regulatory Impact Statement on accessible housing.

Abstract

What do measures for increased accessibility for people with disabilities cost? And what benefit do the measures provide? What analysis methods are there to evaluate the effects of increased accessibility? This report presents a survey of socio-economic analyses carried out in the Nordic countries and internationally.

An accessible society is a priority goal for the Nordic countries’ disability policy. The concept of universal design has become increasingly central to the Nordic countries’ work.

Calculations of the costs and benefits of measures for increased accessibility are requested by authorities and companies as well as organizations. The report presents studies, methods and analyses to evaluate the benefits and costs of various measures within universal design and accessibility. 

The focus is on cost-benefit analyzes and impact studies. The mapping has been carried out via a literature search, surveys to experts and two workshops. A total of 45 studies and seven literature reviews are presented in an English-language appendix. 

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